Tag: student

Posted on

Technology and the Intersectionality of Larry P.

Image credit: Fibonacci Blue, Flickr (https://flic.kr/p/q3PXEY)

Based on the professional peer-reviewed research, intersectionality can be understood as the phenomenon in which an individual person’s social position relative to more than one socially defining characteristic, such as race, language, gender, disability, socioeconomic status, etc., come together to simultaneously impact a person’s status in and access to society at large. Where a person fits into the world is a matter of multidimensional considerations.

When looking at the question of whether the current mechanisms of our system of government, and the behavioral rewards inherently built into them, truly serve the good of the people according to the will of the people and the rule of law, the importance of intersectionality to the accuracy of our analyses cannot be overstated. There is no “silver bullet” that will eliminate all of our social challenges with a single shot. Solving our complex, interconnected problems takes complex planning and execution.

Society is a complex system of inextricably intertwined considerations that all have to be accounted for in order for everyone’s needs and rights to be equally met. There are no cutting corners, and we now have the computing power to stitch together effective systems of equity for all into the ways our government functions, if the technology is just used the right way. The fail-safes that can be built in and the audit trails that would be automatically created would prevent and capture any attempts at abuse just as a matter of normal functioning.

We aren’t there yet, but the application of enterprise-class computing technologies to the delivery of publicly funded services is inevitable, and it will streamline a lot of inter- and intra-agency operations, trimming the administrative fat within a lot of State and local publicly funded programs. Eliminating human error and dishonesty from a public agency’s administrative processes prevents episodes of noncompliance that puts the agency in legal jeopardy.

I’ve told the story in past posts of the case in which one of my students went for months without a needed piece of equipment ordered by his Occupational Therapist (OT) as an accommodation for his sensory needs in the classroom, which meant he was up and out of his seat disrupting the instruction, because of an interpersonal feud between two mean old ladies who hated each other in administration. One of the mean old ladies worked at the student’s local school site in the office, processing purchase requisitions and submitting them to the school district’s main office to be processed into purchase orders.

Now, this was back in the day and all of this was done using paper and the district’s own internal courier service, commonly referred to as “brown mail,” because most things came in those big brown manila envelopes. There was no email. If things needed to move faster than brown mail, it was done via fax. So, context.

The other mean old lady in this situation worked in the accounting office at the district offices. I’m not exactly clear on the details of why they hated each other so much, but I do recall that it had something to do with either a green bean casserole or a three-bean salad – I can’t remember which – at some kind of district holiday party. Like, maybe both of them brought the same thing and it turned into a feud over whose was better, or something? I don’t entirely recall the details, I just remember it was something to do with beans and a holiday party and that it was totally dumb.

The mean old lady at the district offices would sit on the purchase requisitions submitted by the mean old lady at the school site just out of spite, without any regard for the people who had submitted the requisitions to the mean old lady at the school site or any students who may have been impacted by her behaviors. The mean old lady at the school site wasn’t willing to call over to the mean old lady at the district offices to find out what had happened to her requisitions, so she’d become hostile with the school site staff who would ask her where their stuff was. They became afraid to ask her where their stuff was, and just took it as a given that the average purchase would take at least 60 to 90 days before it came in.

Computers don’t do any of that! As many concerns as we have about computers processing things correctly, that comes down to how they are coded. They aren’t going to fight with each other over three-bean salads at a Christmas party and then undermine each other professionally to the detriment of the constituents they are being paid by the taxpayers to serve.

So, knowing that the implementation of the technology is inevitable, our job as informed voters and taxpayers is to understand what that technology needs to be able to do in order to truly perform according to the principles of democracy and the rule of law. That technology must account for how intersectionality impacts every person, whether staff, vendor, or constituent, who must participate in the execution of the government’s responsibilities to the people.

This brings me to a very specific issue within special education in the State of California that has affected way too many families in a detrimental way, which is the intersectionality of the African-American experience with special education in the public schools. This is an under-researched and poorly regulated aspect of our current modern society, here in California, and as the State seeks to shore up democracy in spite of the many forces presently working to undermine it, I believe this specific instance of intersectionality particularly deserves the State’s attention.

I’m speaking specifically of the long-outdated and now inappropriate Larry P. requirement. To quote the State:

“The Larry P. Case“

In 1972 in the Larry P. case, the United States District Court for the Northern District of California found that African American students in the San Francisco Unified School District were being placed into classes for “Educably Mentally Retarded (EMR)” students in disproportionate numbers, based on criteria that relied primarily on the results of intelligence quotient (IQ) tests that were racially and/or culturally discriminatory and not validated for the purposes for which they were being used1. In 1979, the court permanently enjoined LEAs throughout California from using standardized intelligence tests2 for (1) the identification of African American students as EMR or its substantial equivalent or (2) placement of African American students into EMR classes or classes serving substantially the same functions3.

The court held that court approval would be required for the use of any standardized intelligence tests for African American students for the above purposes. The court laid out a state process for this. 

The EMR category no longer exists. The court has never held hearings to determine the “substantial equivalent” of the EMR identification or placement, or whether IQ tests are appropriate for assessing African American students for identifications or placements other than the substantial equivalent of EMR. The state process to seek approval has not been invoked.

Although the law on assessment has evolved, as described above, the Larry P. injunction remains in place, and the court retains jurisdiction over its enforcement. The Larry P. injunction does not apply to tests that are not considered standardized intelligence tests.


Footnotes
1 Larry P. v. Riles, 343 F. Supp. 1306, 1315 (N.D. Cal. 1972).
2 The court defined a standardized intelligence test as one that result in a score purporting to measure intelligence, often described as “general intellectual functioning.”  Larry P., 495 F. Supp. 926, 931 n. 1 (N.D. Cal. 1979), affirmed in part, reversed in part, 793 F.2d 969 (9th Cir. 1986).
3 Larry P., 495 F. Supp. at 989.

Here’s what everybody needs to get, and which way too many school psychologists and other special education assessors in California’s school districts do not: Larry P. only applies to norm-referenced intelligence quotient (IQ) tests that result in a full-scale IQ (FSIQ) score. It doesn’t apply to the Southern California Ordinal Scales of Development (SCOSD) Cognition subtest. It doesn’t apply to any standardized speech/language assessment measures. It has nothing to do with OT. It has nothing to do with measuring academic achievement using standardized assessment tools.

Unless the assessment measure is designed to produce an IQ score, Larry P. does not apply. But, I’ve now handled a half-dozen cases in the last couple of years in which the whole reason why the students’ IEPs were poorly developed was because they’d been poorly assessed by people who didn’t score any standardized measures for fear of violating Larry P. because they didn’t actually understand the Larry P. rules. The professional development on this issue throughout the State is atrocious.

More to the point, the State needs to invoke its process to seek approval to now use the current, modern, unbiased IQ tests in the special education process, because the assessment failures caused by poorly trained cowards who don’t have the sense to go onto Google and look up the rules themselves and/or push back against administrative supervisors steering them in a non-compliant direction are causing a cataclysm of disastrous consequences at the intersection of the African-American experience and childhood disability in the State’s public schools. This just feeds these kids into the gaping maw of the School-to-Prison Pipeline.

I want to take it one more step further than that, though. I want to encourage more representation of the African-American community in special education assessment. I want to see more college students of color going into school psychology, speech/language pathology, OT, assistive technology, etc., so that they can be there to advocate from an informed, expert perspective within the system for the children from their own community who are at risk of being otherwise misunderstood by people who lack the perspective necessary to appreciate the long-lasting impacts of their assessment errors.

People who don’t actually understand the rules can over-interpret them in an over-abundance of caution. They will not do more than what’s actually been prohibited for fear of doing something they aren’t supposed to, to the point that they’re not doing what they are supposed to be doing. They go from one extreme to the other. In an effort to avoid committing a State-level Larry P. violation, they commit a violation of federal law by failing to appropriately assess in all areas of suspected disability according to the applicable professional standards and the instructions of the producers of the standardized measures used.

It’s currently a “from-the-frying-pan-into-the-fire” situation for the State that is wrecking lives and creating special education violations left and right. The State is setting up its public schools to fail at this particularly significant intersection of social factors, at the same time that the State is seriously considering reparations to the African-American community here in the State.

I promise you that none of the assessors I’ve encountered in the last few years who have been committing these Larry P. violations are actually trying to be hurtful. None of them know what they’re supposed to be doing and they’re making dumb errors in judgment, often under pressure from authoritarian administrators who don’t know an IQ test from a roll of toilet paper.

I’m advocating, here, for both the development and implementation of enterprise-class computing technologies that will automate as much of the public sector’s administrative functions as possible according to the applicable regulations, including mandated timelines, as well as for the State to request the court to reverse Larry P. so that schools are no longer enjoined against using current, valid, appropriately normed IQ tests in the assessment of African-American children in California for special education purposes. These two things matter to each other.

Larry P. is no longer a solution, it’s a problem. It’s not that assessors couldn’t work around it; it’s that they don’t know how to work around it and they commit more errors trying to than anything that could possibly go wrong actually using an IQ test on an African-American student in this modern day and age. Further, the specific ecological factors that contribute to the success of students who are impacted by the intersectionality of their disabilities with other traits that can affect their social standing, such as ethnicity, need to be understood as specific data points worthy of intense administrative and policy-making examination.

As a matter of civil rights and monitoring its own internal compliance with Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, one would hope that a public education agency would want to know if particular classes of students are somehow being under-served and need more attention from the adult decision-makers involved in their educational experiences. Who is monitoring each school district’s compliance with Larry P., right now? Is that the job of each district’s 504 Coordinator? How is Larry P. compliance in the field such an issue, still, after all of these years and, more to the point, why is it even still a requirement after all of these years?

Analyzing data from an enterprise-class computing solution regarding intersectionality among special education students would help public education agencies recognize trends of noncompliance and programming failures. This would include rampant Larry P. violations producing shoddy assessments that result in poorly crafted Individualized Educational Programs (IEPs) that fail to deliver appropriately ambitious educational benefits according to the current Free and Appropriate Public Education (FAPE) standard pursuant to the 2017 Endrew F. Supreme Court decision.

Issues of intersectionality can be captured by competent data analysis, which can be greatly facilitated by properly coded enterprise-class computing technologies, and used to ensure that all students, pursuant to Endrew F., receive an IEP appropriately ambitious in light of their unique, individual circumstances. A properly configured system would be spitting out reports detailing the instances of noncompliance to the inboxes of the key decision-makers so they could respond as quickly as possible.

Had such a system already been implemented, the Larry P. violations I’ve encountered all over the State over the last couple of years would have been caught among all the others I haven’t encountered and either rectified or prevented altogether by the State realizing what a colossal disaster Larry P. has become in the field and executing the process outlined by the Court to put an end to it. Were the State monitoring the right data points, it would have realized that Larry P. needed to be ended a long time ago and that it causes infinitely more problems than it solves because it forces assessors to assess African-American students differently than everyone else, which is not equal access.

Frankly, this lack of equal access is more discriminatory than using an IQ test could ever possibly be and becomes even more so when the quality of the assessments are compromised because the assessors don’t know how to comply with Larry P. and they jack up their entire evaluations in the process. Jacked up evaluations lead to jacked up IEPs, which lead to the denial of educational benefits and all the consequences that these children will experience over their lifetimes as a result of being deprived of a FAPE.

The people who make these kinds of errors will be among the first to engage in victim-blaming once these students end up in the justice system, acting like it was unavoidable and inevitable, because they can’t recognize or accept the degree to which they had a hand in making it happen. The people who do it on purpose hide among the people who don’t know what else to do, fueling the victim-blaming, which becomes part of our current, exhausting, ridiculous, ongoing culture wars.

I would rather see Larry P. ended so that it’s no longer creating confusion among assessors in the field and technology implemented that will identify when things like this are going on so they can be stopped early on. I would much rather monitor digital data as a compliance watchdog as I get older than have to go in, one kid at a time, to hold the public education system accountable to its mandates under our democracy’s rule of law. So long as there is transparency in how the system operates and all the real-time data, other than anything personally identifying, is accessible to the public to be analyzed for compliance failures, technology stands to enhance the functions of democracy. But, it all comes down to how its coded.

I expect that watchdogs and advocates in the future will spend more time analyzing system-generated data than necessarily representing individual students, and that a healthier partnership between the public sector and the citizenry can evolve in which the user feedback shared with system developers and operators can be used to enhance its functions and allow each agency to serve its mandated purposes in a compliant manner that is both cost-effective and substantively effective.

The more that social and behavioral science is integrated into the policies, procedures, and applied technologies in the public sector, the more effective and efficient they will be. The more integrated the technologies among all of the public agency stakeholders, the more cohesive the communications and execution of time-sensitive tasks. I see a future in which systemic violations, such as rampant Larry P. failures, will trigger an examination of the intersectionality of disability and other social factors, such as ethnicity, on compliance and help identify when something like getting rid of Larry P. needs to happen sooner rather than later.

I see this Larry P. mess as yet another compelling argument for the implementation of enterprise-class computing technologies within public education administration. I hope the State is listening.

Posted on

Interview of George Bailey, President of ZPods

https://zpodsforsleep.com

Transcript of Interview:

Anne Zachry 0:00
Welcome to “Making Special Education Actually Work,” an online publication presented in blog in podcast form by KPS4Parents. As an added benefit to our subscribers and visitors to our site, we’re making podcast versions of our text-only blog articles so that you can get the information you need on the go by downloading and listening at your convenience. We also occasionally conduct discussions with guest speakers via our podcast and transcribe the audio into text for our followers who prefer to read the content on our blog. Where the use of visual aids legal citations and references to other websites are used to better illustrate our points and help you understand the information, these tools appear in the text-only portion of the blog post of which this podcast is a part. You will hear a distinctive sound [bell sound] during this podcast whenever reference is made to content that includes a link to another article, website, or download. Please refer back to the original blog article to access these resources.

Anne Zachry 0:58
Today is March 31 2022. This post in podcast is titled, “Interview of George Bailey, president of ZPods.” In this podcast, which was originally recorded on March 23 2022, George and I discuss the impact of sleep disorders and related conditions that interfere with children’s access to education and the research being done into his company’s sleep solutions for children with autism, sensory integration disorders, insomnia, anxiety, and other disorders that can negatively impact their sleep quality.

George Bailey 1:29
Hi, I’m George Bailey, and I’m president of ZPods. We’re a startup in St. Louis, and we are developing sensory-friendly beds for autistic children and others who have severe sleep problems that are caused by sensory issues. So, our goal is to help out as many of these kids as possible. We enjoy it … and, uh, yeah.

Anne Zachry 1:54
That’s very cool. And I know that when I was emailing with you guys back and forth, when we were coordinating all of this, you know, my first question was what kind of peer reviewed research do you have behind what you’re doing? Are you doing any kind of studies? And, I understand that, not only are you … because you were just telling me that you’ve got a regional center here in California that’s already funded your product for one of its consumers, and they’re not going to just jump on something unless there’s evidence to back it up. But I know that you guys are also participating in some evidence … some studies and whatnot to collect the hard data that speaks to not just whether or not it’s effective, but what makes it effective. How is it effective? And what is the science that underpins what it is that you’re doing? And so I was hoping to get more information about that from you guys, in terms of what’s … what’s the research currently being done on the efficacy of your solution?

George Bailey 2:44
It’s such a good question. And, you know, I was just telling somebody earlier that one of the reasons why it took us a while to get around to really focusing on autism … we were thinking about, like, you know, “Where we should go?” … is because when people would tell us, you know, look at autism, early on, as we were trying to find an application for sleep pods that were great. We were bringing it from China, I balked at it. I’m a father of five. And I have two kids on the spectrum. And I thought like, “Ah, come on guys,” … like, parents of autistic children get all sorts of stuff.

Anne Zachry 3:19
Oh, yeah, for sure.

George Bailey 3:20
… business. Yeah. I don’t want business on playing on people’s hopes and stuff like that. And so I, initially when I approached him, and said, “Okay, I want to take this serious, because we’re getting that feedback that says we should do this.” But I started talking to experts, and with parents of autistic children, and interacting with autistic children of my own. And the feedback was a resounding, “Please try it.” And I think that … so, I’m going to answer your question two parts: I think that there’s an intuitive evidence and I think that there’s going to be actual evidence and the intuitive of evidence is kind of based on all of our collective experience.

Anne Zachry 3:59
Right, the anecdotal data. Yeah.

George Bailey 4:00
Yeah, yeah. There’s some heavy anecdotal evidence that’s seems to say, like, these children really value … they have the same needs as if … in that there’s, kind of, like, one type.

Anne Zachry 4:11
Right. There’s no monoliths, but, yeah, kids with similar needs. Yeah.

George Bailey 4:15
Yeah. These kids tend to love sleeping in the closet, under the bed, up against the wall, and … there’s something that’s like it. And there was enough there for us to see, so there was something there. But, all of the things that, kind of, come together out of this bed, it was not built for kid’s processing, initially. It was just, like, an enclosure with some LED lights and some fans and a mirror, and all of those elements, when combined together, seemed to form this really fantastic environment. And if you were to take any one of those things, separately … study this out and find some interesting things. Like for example, when you enclose somebody, then you give them darkness … well, darkness is heavily prescribed for good sleep hygiene.

Anne Zachry 5:06
Right.

George Bailey 5:06
… darker or something like that. It’s separate, but the enclosure itself provides almost like a sensory …

Anne Zachry 5:12
Right.

George Bailey 5:13
And, then, LED lights, you know, again, heavily used in the sensory, or special needs community …

Anne Zachry 5:22
Right.

George Bailey 5:22
Heavily used. And so all of these things … Now, where we’re at with clinical trials is that we’ve been in touch with the folks at the Thompson Center for Autism and Neurodevelopmental Disorders.

Anne Zachry 5:27
Um-hmm.

George Bailey 5:37
The lead clinician for this project is going to be Dr. Christina McCrae, who is published widely on autism and sleep, and that was a must. We needed somebody to do … to ask the right questions …

Anne Zachry 5:48
Right.

George Bailey 5:49
… not do what we say. I am trying my best to remove myself from the academic questions as much as possible to just, kind of, stand back and let them do their work.

Anne Zachry 6:01
Right.

George Bailey 6:01
Because, it needs an honest assessment. That was my stance from the beginning, is that, if were going to go into this, here’s how we’re going to look at it: We’re going to find out what’s true. And what’s true may not be as flattering as what we’d like, or maybe it’ll be moreso. Maybe it will be better than, you know … maybe we’re not being optimistic enough? I don’t know.

Anne Zachry 6:20
Right.

George Bailey 6:21
… but if we learned that “X” works … and we will continue to do facts …

Anne Zachry 6:25
Exactly!

George Bailey 6:26
… if we can say, if we learned that, “Y” doesn’t, then we will also chalk that up to success and say we’re going to stop doing “Y.” And if we learned that we should probably … there’s an implication here that we should be trying “Z,” then we’re going to start pursuing that. We’re not …

Anne Zachry 6:43
Right.

George Bailey 6:43
… because I think that it requires that kind of mentality to really test this out. So …

Anne Zachry 6:49
Well, yeah. I mean, any kind of solution requires that kind of mentality. That’s just common sense. Which, you know, we also call scientific method.

George Bailey 6:59
It’s hard to do this in our community. When you’re an entrepreneur, you’re hustling and you’re getting out there. You’re constantly … you just gotta, you know, sell, sell, sell, and you got to pitch your brand, bla bla bla. But you got to break out of that sometimes and just listen to what is being told to you.

Anne Zachry 7:19
Right.

George Bailey 7:19
And sometimes even … sometimes that’s hard, but you put your heart and your mind to it and your … and your money, as well. It’s very difficult, but at the same time, if you listen, then the rewards in terms of, kind of, like, personal satisfaction that you are doing right by the people that you’re trying to serve … Pretty tremendous!

Anne Zachry 7:40
Yeah, and I have to agree with that. Well, and what you’re making me think of is that the psychology of sales and marketing is the exact same science as the psychology of good instruction. It’s … it’s all the same thing.

George Bailey 7:52
Yes!

Anne Zachry 7:53
It’s all the same thing. And so, what you’re doing is … when you’re doing … there’s the, you know, the snake oil salesman, kind of, “I’m going to sell ice cubes to Eskimos and get people to part with their money for things they don’t need.” But then you also have consultative sales, which is responsible sales, where you’re actually … you’re not out there selling, you know, product features, you’re out there selling solutions to people’s problems. And you’re … you’re approaching it from the standpoint of, “What is your situation and do I have something that will help you?” And if you do, then what you’re really doing is you’re not selling the product, you’re selling the solution, and the product just happens to be the means to that end. And that’s a more authentic thing. And you build relationships with people. And it requires you to listen to what their needs actually are. And this is what they’ve been, you know, all these sales classes, they have people take, this as the message, and this is what you’re doing. But it’s also exactly the same thing as when you’re trying to identify an IEP solution for a kid. You’ve got to pay attention to what’s going on with the kid as a unique individual and match the solution to the actual need. And so there really is no difference between consultative selling and IEP development when you’re talking about matching solution to need. And …

George Bailey 9:11
I love that perspective. And, you know, it’s interesting, because I found myself in a few situations where I’ve actually explicitly told the parent, “I don’t think we’re a good fit for you.” And I feel like … it may feel like a, kind of, short-term security to be able to say, like, “Yay!” You know, “We sold another bed.”

Anne Zachry 9:30
Right.

George Bailey 9:31
But, it’s a long term hurt on the brand. If you really are trying to establish yourself, it’s like, we don’t make scientific claims. No matter what, here’s the crazy thing. It’s like no matter how many times I say that we are not making medical claims …

Anne Zachry 9:48
Right.

George Bailey 9:48
… there will be parents who read onto what we’re our saying medical claims …

George Bailey 9:53
Right.

George Bailey 9:53
… because hope springs eternal and they’re looking for a solution and this sleeplessness … sleeplessness of their child is causing them genuine distress.

Anne Zachry 10:05
Right.

George Bailey 10:06
When a child’s not sleeping with the entire family has suffered.

Anne Zachry 10:09
Exactly!

George Bailey 10:11
And so you have to be really careful to kind of repeat that again and again. But at the same time, there’s the kind of the other interest … is that you also want to make sure that you get it out there, because you rely on those early adopters who are like, really like, they’ll take a risk.

Anne Zachry 10:28
Right.

George Bailey 10:28
I love those people. I am not an early adopter, okay, I wasn’t on Facebook until 2011. I’m the last kid on the block buy the new thing. But the early adopters, one of the things whether they succeed or fail with your solution, they give you information, that it’s very valuable, you have to respect that …

Anne Zachry 10:52
Absolutely!

George Bailey 10:53
… going back to your sales mentality, I think you’re right, I don’t think that it’s always true. I’ve seen salespeople, huge tricks of the trade that I personally find to be manipulative …

Anne Zachry 11:07
Right.

George Bailey 11:07
… but I used to be a foreign language instructor …

Anne Zachry 11:12
Hmmm.

George Bailey 11:12
… for nine years. And it was really fun. I loved that time in my life, where I got to teach, and there was always, kind of, the part of explanation.

Anne Zachry 11:24
Yep.

George Bailey 11:25
You know, where you had to learn to, kind of … and a lot of the explanation that I did was kind of fun, it’s a little bit off topic, but you know, I taught Mandarin Chinese, first year. And that was very fun. And, the way that we would explain things … we were told by the teacher that we worked with, I was a teacher’s assistant that also taught courses, you’re not going to use English to teach Chinese, you’re going to use Chinese to teach Chinese.

Anne Zachry 11:49
Right.

George Bailey 11:50
So, there was a lot of need to be able to be empathetic with my audience. When I was looking at 20 of my students saying, “Wǒ” (我) which is the Chinese word for “I” or “me,” that I’d have to see, are they really getting it? And I think that with the art of sales, you have to really listen to people.

Anne Zachry 12:10
Yeah.

George Bailey 12:11
And the better you are at listening to people and their needs, I think the better you’re going to convey, like, that … that you really care and that you’re ready to solve a problem and not just, like, you know, get … sell snake oil.

Anne Zachry 12:24
Right. Well, again, I relate it back to … everything back to IEPs, because if you think about the IEP process, it’s the same thing. You can’t write an IEP, an individualized program of instruction for somebody, unless you listen to what their needs actually are. There’s not a one size fits all. That’s called Gen Ed.

George Bailey 12:45
Yes, yes.

Anne Zachry 12:46
You know, and, and so, you know, general education is the assembly line. And special ed is the custom shop.

George Bailey 12:55
You know, I really agree. We’ve worked with some IEP experts with my oldest son, Joseph. And I was always really touched. When I felt like they were taking the time to listen to me. And when they were really looking at my son and his specific needs, and so that’s, you know, it’s a labor of love. And it’s really critical to look at each child as an individual.

Anne Zachry 13:20
And, it’s required by law for that reason.

George Bailey 13:23
Yeah.

Anne Zachry 13:26
So yeah, so I mean, I realize there’s overlap, you know, all these processes and procedures that everybody’s using … it’s interesting that no matter what outcome you’re trying to achieve, very often there’s a similar formula to how you make it happen. And there’s always a needs assessment. And then there’s a matching of solutions and need.

George Bailey 13:44
A situational analysis.

Anne Zachry 13:45
Yeah. And so, I mean, it’s, again, you know, it’s common sense, otherwise known as scientific method. But, well, this is very interesting. So what, what kinds of … what kinds of responses have you gotten from the families who are using the ZPods?

George Bailey 14:02
So, we’ve got both the responses that have been highly favorable, and some that have been like, “Meh,” you know, but even with that, what we’ve never gotten .. what we’ve never heard from a single parent is, “My child does not like your bed.” We may have gotten responses like, “Your assembly instructions need some real clarity and they’re very inconvenient,” like, you know, we’ve gotten that …

Anne Zachry 14:25
Right. Technical stuff.

George Bailey 14:27
… from the parents, but the one universal is, “Our kids love, love your bed.” And then we’ve had another set of children where it’s like, minimalist a fact that they love it; they use it as a chill space. Right?

Anne Zachry 14:40
Right.

George Bailey 14:41
And then we’ve had a very large number of parents and again, I hesitate to get the numbers. I’ll give you what numbers I can, to be as, kind of, precise as possible. And we’ve worked between … with between 60 and 70 families, okay. And that number is always increasing and that there’s been a very high degree of customer satisfaction and a consistent feedback from families like, “Wow, my kid’s doing things that I’ve never seen the kid do before,” We’ve had, for example, one of my favorites was Dawson, a six-year-old boy, who, after a week of sleeping in our bed, the … first of all, the immediate result was that his sleep jumped from roughly two or three hours a night to about eight hours at the very least.

Anne Zachry 15:28
Praise God! That by itself is worth it.

George Bailey 15:30
Yes, that by itself is already worth it. But then, the, kind of, double validation came a week later, when the school teacher for Dawson pinned down the mother and said, “What are you guys doing different?” Because that was unsolicited.

Anne Zachry 15:49
Right.

George Bailey 15:50
One of the things we have to be really careful about as we study this is that parents who take the time and the trouble to purchase one of our beds have a bias towards believing that they made a good decision.

Anne Zachry 16:03
Right.

George Bailey 16:05
And, I don’t want to manipulate that. We want them to be happy, naturally. We want them to feel like they made a good decision. But I also acknowledge that bias that they have. So, when it comes to the third parties that come in and say, “Wow, I’ve seen some really, really great improvement,” … but we’ve seen that a fairly large number of cases where we’ll have like an OT say to parents, “This bed has been a game-changer,” things like that.

Anne Zachry 16:32
Right.

George Bailey 16:33
And, in Dawson’s case for the teacher to come up without knowing that there was a change in his sleep, but just saying, “This kid is more alert, more focused.” And, incidentally, in his particular case, there was talked amongst the parents about the possibility of institutionalizing him.

Anne Zachry 16:50
Right.

George Bailey 16:50
Because it was that bad.

Anne Zachry 16:52
Yeah.

George Bailey 16:53
And, Dawson’s not a bad kid. We know that. But, anybody who is under-slept so severely is going to have severe behavioral problems.

Anne Zachry 17:05
Right.

George Bailey 17:06
Sleep has incredible value for for the brain, for the body, you know, for cognition. it’s just …

Anne Zachry 17:14
… it’s neurologically necessary.

George Bailey 17:17
Yeah.

Anne Zachry 17:17
And it’s a … it’s part of human survival. You have to go through that or you will … it will make you literally ill. And …

George Bailey 17:25
And it sounds kind of funny, like trying to sell sleep. We’re not selling sleep, per se; it’s that we’re selling something that we hope will cause more sleep. But it’s almost a little bit kind of funny to hear myself, like, “Aww, now I’ve become one of those sleep preachers!” I keep reading these books about sleep, and I’m, like, these guys are all … dealing with sleep and saying the same thing. It’s almost like talking about water.

Anne Zachry 17:48
Right.

George Bailey 17:49
“Did you ever see the rejuvenative powers of water? It’s incredible!”

Anne Zachry 17:56
I know you … you really have hit on a very fundamental, visceral, survival-level kind of need that sadly enough in our society is neglected. And, you know, and you’re … you’re looking at, “Okay, how do we address this fundamental survival need, and these individuals who are struggling with this who … and are compromised?” And so I think that … I mean, I’m always excited to see new stuff. And anecdotal evidence is always a sign that, okay, we need to look into this a little bit more deeply to see, you know, what makes us you know, for real, so I’m always happy to hear that, you know, with stuff like this, the early adopters are like, “Oh, no, this seems to be doing a thing.” And all of it makes sense. I mean, logically, and intuitively, you’re right, it all logically makes sense. But it’s still going to be interesting to see what kind of research data comes from it and you know, … maybe some grad school student will latch on to it and want to write a paper or something. You just never know, and so …

George Bailey 18:54
And, that’s what we’re encouraging constantly. It’s that we want it to be subjected to scrutiny, empirical data, empirical study and and we also want to urge all companies out there that are trying to provide a solution for the autism community to find ways to get at third parties that are impartial to come in, because you only stand to gain …

Anne Zachry 19:19
Right.

George Bailey 19:20
… you may not hear what you think you hear; you may not hear what you want to hear, but you are going to hear what is going to be beneficial.

Anne Zachry 19:28
Right. Once you know what you’re working with, you can say, “Okay, well this is what I know I can do and I’m gonna stay in my lane and do only that,” you know? “I’m not gonna try and be everything to everybody,” and there’s … there’s a lot of value in that …

George Bailey 19:49
And, we don’t want that, either. You know, there’s this temptation to kind of overplay it, like, “Hey, you know this is going to do “X” and “Y” for the kid’s autism,” but you don’t know, it’s gonna be different for every kid, and it’s going to … whatever your child needs is going to be a very large combination of things. We are one part of a very, very complex puzzle of sleep …

Anne Zachry 20:03
Right.

George Bailey 20:04
There are physiological components to it, you know, some people can’t sleep because like internal parts of how they function.

Anne Zachry 20:13
Right.

George Bailey 20:13
Others that they’re … it’s just a matter of really good sleep hygiene. Some have a more selective sleep hygiene, which is kind of where we play …

Anne Zachry 20:20
Um-hmm.

George Bailey 20:22
… where they really need the aspect of enclosure, I don’t need to be enclosed in something to feel safe.

Anne Zachry 20:30
Right.

George Bailey 20:31
You know? Then again, I like being enclosed in my home, in my bedroom. You know? And then in my wife’s there. Those are some of the things that add to my own personal satisfaction …

Anne Zachry 20:42
Right.

George Bailey 20:43
… where I can calm down and initiate sleep. But some kids, they just thrive on …

George Bailey 20:50
And, you’re making me … the word “proximity” pops into my head, where … proximity to the wall, you know? How close are the walls to me? As … you know, if you’re … if you feel safe within your house, you’re still within a structure. But if that feels too spacious, and you need to have the walls closer to your physical presence to really feel that … that enclosed feeling, then I … then, yeah, that would, to me, say that some individuals need the walls in closer proximity to their physical beings than others. And, it again goes to everybody falls on a spectrum of some kind in every aspect of development one way or another. And that’s … this is just the one that you happen to be dealing with. And …

George Bailey 21:37
Yeah, some kids, actually … so our bed, it fits a twin size mattress; it’s about three feet tall on the inside. It’s pretty big I can I can sit up, I can kneel down and I’m barely touching my head.

Anne Zachry 21:51
Right.

George Bailey 21:52
So some kids feel comfortable in that, and they feel it. And I’m wondering, this is now I’m, kind of, theorizing that I wonder if this would fall under the proprioceptive sense. You know, where you can kind of sense that closeness to something without it being a touch sensation.

Anne Zachry 22:10
Yeah, because proprioception is like your the sensation of your body moving through space. And, yeah, and pressure and those kinds of things. Well, and I’m wondering if you’re enclosed inside of the pod, how much of it is air pressure? And if there’s an inner ear vestibular piece to it as well?

George Bailey 22:29
Yes, yes.

Anne Zachry 22:30
That’s curious.

George Bailey 22:31
… really comfortable, that other people feel like all they need around them are the warehouse walls of a Costco.

Anne Zachry 22:37
Right.

George Bailey 22:38
You know, something very large, they’re fine with that, you know? So …

Anne Zachry 22:43
Well, and it makes you think of our kids on the spectrum that struggle with personal space, and getting all up in people’s faces, and they don’t understand that other people have a personal bubble, and you need to step back a few.

George Bailey 22:54
Oh, that’s a great comparison!

Anne Zachry 22:55
And I’m wondering how much of that is inter played with what you’re dealing with? That’d be an interesting line of inquiry to explore.

George Bailey 23:01
Yeah.

Anne Zachry 23:03
Yeah. Well, you know what I’m thinking of to is here in California, which I know is unique, because not most states don’t have anything if any other states do. I’ve not heard of any other states that have it. But here in California, the Department of Education operates what they call Diagnostic Centers. And there’s three of them. There’s one up in Northern California in Fremont. There’s one in the central part of the state in Fresno. And then there’s another one down in LA for … that covers Southern California. And what they do is they’re … they’re funded out of the State’s federal special ed dollars and state special ed dollars, skimmed off the top, and then all the rest goes to the public schools. And so what Diagnostic Center does is they conduct evaluations of students who their local education agencies are having a heck of a time, even going through all the normal assessment procedures, trying to figure out what to do for these kids. And what they do, it’s an on-site thing where they … the family will go and the State will put them up in a hotel and give them coupons to, like, Soup Plantation, you’ll never want to eat there again by the time you’re done … and, and you stay there for like three or four days while your child is being evaluated by all of these “ologists” in this facility, while you as a parent are sitting on the other side of the one way glass watching the whole thing. And you’re getting interviewed and they’re just like turning, you know, your whole world inside out to get a handle on what’s going on with this kid. And I’m wondering if Diagnostic Centers wouldn’t benefit from having something like this to test with those kids who have those kinds of issues.

George Bailey 24:34
That is such a great question. Well, first of all, let me say that California has a fond place in my heart. I was born and raised in Hayward …

Anne Zachry 24:42
Oh, right on.

George Bailey 24:51
… so not too far from your Fremont Diagnostic Center. And, you know, In-and-Out Burger, I don’t know if you’ve ever been there …

Anne Zachry 24:51
Oh yeah.

George Bailey 24:52
Best hamburgers in the West. Great place. But to your point, that’s actually … I don’t know if we’ve toyed with that specific idea. I love that a lot. One of the things we have toyed with that we’re working on right now, it’s hard to get started to get … we’re very … we were three years old as a company,

Anne Zachry 25:11
Oh, you’re babies. Yeah.

George Bailey 25:12
Yeah, we’re babies. We’re two years old working within the autism community.

Anne Zachry 25:16
Got it.

George Bailey 25:18
But one of the things we’d love to see happen is we would like to get more Airbnbs to use these …

Anne Zachry 25:25
Ohhh!

George Bailey 25:25
… just depending on what kind of family it is. Well, then the point is that it’s kind of like if you go to the mattress store, and the guy says, “Well, try the mattress out, see how you like it.” Well, you’re gonna sit on the end, and kind of push it down with your hands. You don’t know what you’re doing. It’s kind of like, “How do I know if this is good?” And then he’ll tell you, “You gotta lie down.”

Anne Zachry 25:46
Yeah.

George Bailey 25:47
So we’re trying to take it to the next level with our idea of putting these in Airbnbs because then it’s like getting inside the bed. We’re pretty good at assessing, we’ve had a number of kids come by St. Louis, just to try it out, get inside, and they love it. It’s pretty automatic. And they’ll close themselves in without being asked to do so. It was actually my son, when he did that. And then lie down. And I didn’t know what he was doing in there. I gave him five minutes alone, just kind of waiting. And then I was just like losing my patience. And I opened the door. And there he is on his back with his hands behind his head. Very chill, very relaxed. And that led me to like, “Okay.” That was one of my earlier signals were onto something. The point is that I could observe that for five or 10 minutes. Or I could do it overnight…

Anne Zachry 26:36
Right.

George Bailey 26:37
… with a lot more confidence.

Anne Zachry 26:40
It’s like an opportunity to try it out. You know, that’s interesting that you would say that, because separate from what we do in special education, I have a whole other program that we run that’s devoted to sustainable living and food security.

George Bailey 26:53
Yeah? Oh, that’s great!

Anne Zachry 26:53
And yeah, and so it’s all evidence based instruction. It’s the Learn & Grow Educational Series. But what we’re looking to do is build these Learning Centers where people can come and stay in a sustainably built structure, with grey-water recapturing and composting toilets, and all these things that sounds scary, but really aren’t and try it out for a few days …

George Bailey 27:00
… would love this, what you’re doing by the way!

Anne Zachry 27:15
Yeah, and …

George Bailey 27:15
… very much into this!

Anne Zachry 27:17
… our ultimate goal is to at some point in time … what’s the point of convincing people to live this way, if there’s no place where they can go live this way?

George Bailey 27:25
Yes!

Anne Zachry 27:25
… is we also want to be able to do affordable housing that’s sustainably built with all of these same technologies. And so that if they go and they … they do a trial through Airbnb, at one of our Learning Centers that we are looking to build in the future, that they go, “Oh, I can deal with this. This isn’t gross. This is still really bougie. I can handle this,” you know, then they … they can … there’s a place for them to go buy into a home that has all of those things. Because right now, it’s all the DIYers who are doing that, and not everybody wants to build their own sustainable house. Lots of people just want to go buy a house and move in and be done with it. And but there’s no sustainably built homes in neighborhoods like that. And so it’s the same concept of, if you go and try it out first, and then realize, “Hey, this is cool,” and you see benefits from it, then you’re, like, ready to approach it for real and incorporate it into your actual lifestyle. And so I think that that’s something you are doing that’s in common with what I’m doing in this other program I have. And that there, there’s a lot of value of having that Airbnb Experience out there for people to try things that are new. It’s something that I don’t think Airbnb realized when they first started that they were going to create.

George Bailey 28:34
Yes.

Anne Zachry 28:35
But it’s you know, there’s now all of these places, and now they have Experiences. In fact, our Learn & Grow Educational Series, we actually do classes (and tours) through Airbnb Experiences. For one thing, it’s a lot more affordable to do it that way for us because Airbnb will insure all of the events that we conduct for up to a million dollars per event.

George Bailey 28:55
Oh wow, yeah!

Anne Zachry 28:56
And so that means I’m not having to go down and get a certificate of insurance every time I’m conducting a class. And the owner of the property where I’m doing my classes is like, “Oh, thank God, I’m not going to have to file a homeowner’s claim if somebody trips and,” you know, “sprains an ankle while they’re walking through the driveway or something.” There’s all of these advantages to using Airbnb to create these novel experiences that people can test out for just a few days without having to change their whole living experience. And then if they decide, “Oh, this was worth it,” okay. It is like a living test. And I think that’s … that’s huge. I think there’s a lot of value in that. So that’s exciting. I think that that’s a smart way to go.

George Bailey 29:36
And it’s something … it’s something that we hope to get started as soon as possible. I know that maybe some of your listeners are thinking, “Oh, where can I do this?” It’s still in process. I mean, we’re still looking for people to kind of try it out. We may have something in Indiana, but not … certainly not in California right now. But what’s interesting to me about it is that on a broader topical discussion rather than just autism, it goes to show that we have shifted our purchasing behavior dramatically since the advent of the Internet, and Amazon has really changed.

Anne Zachry 30:07
Huge. Yeah.

George Bailey 30:08
It’s big because, like, we think, for example … we used to think, “Well, what would the brick and mortar store look like for our operation?” And pretty soon after that, we concluded that there is no brick and mortar store for us.

Anne Zachry 30:22
Right.

George Bailey 30:22
That’s not to say that brick and mortar is dead. I’m actually a big fan of brick and mortar. I love getting out there. I love being around people. I love walking around. I don’t want to buy everything I have on online and then cloister myself.

Anne Zachry 30:35
Right.

George Bailey 30:37
But, that being said, this specifically, it’s just, it’s a big product. And it has … you’re going to consider it more like a buy like a car…

Anne Zachry 30:48
Right.

George Bailey 30:48
… which can be which can’t be bought at the store.

Anne Zachry 30:51
Right. Yeah, it’s not an impulse buy. Yeah.

George Bailey 30:54
Yeah, it’s not an impulse … Thank you. That’s basically it. Nice, Anne. Yes!

Anne Zachry 30:59
… that, and, yeah. So, because it takes that consultation planning and forethought and thinking, yeah, it’s not really a retail-oriented kind of thing where you would just have like, the ZPod Store. I can see like, if you had a ZPod section of a mattress store or something. But I can also see, you know, literature in developmental centers and regional center offices, you know, and things like that, where it would be something that, like you said, you’re not doing a medical model. So it’s not necessarily something that would be prescribed. But, you know, like an assistive technology evaluation, when you have kids who are in a special ed, who you’re trying to find out what technologies will give them access to education. Well, what if the issue is sleep? Could that be part of an assistive technology evaluation? And if that’s the case …

George Bailey 31:51
Now that being said, I’m really excited you brought that one up because I was I was just about to bring it up. Assistive technology programs … if you have an assistive technology program nearby, like, ask them about us. And the reason why is because we’re actually currently I mean, literally currently reaching out to all of them. Because we didn’t really even know they existed. I was not sophisticated enough with special needs community that really understand what these things were …

Anne Zachry 32:20
Right.

George Bailey 32:20
… but it’s a program that’s been around since the 80s …

Anne Zachry 32:24
Um-hmmm.

George Bailey 32:24
… and every state has one. And all of a sudden, out of nowhere, last year, the director for the Assistive Technology program for the Commonwealth of Massachusetts, reached out to us. And these guys, they set the standard.

Anne Zachry 32:40
Yeah.

George Bailey 32:41
They’re actually the best in the United States. And this guy, the director, really wonderful gentleman, Tom Mercier reached out to me, I think he’s retired now, but Tom said, it’s, like, you know, “Some parents are really trying to get me to look at this, and I just want to take a look.” And we were like, “Sure!” you know. We set them up with one of our beds, they tried it out with the family. It was really amazing success for this family, to the point where Tom and his team approved for their field operators to be able to recommend the bed.

Anne Zachry 33:13
See in this … yeah?

George Bailey 33:14
I’ll end with saying, now we’re reaching out to every single one of them, just to educate them. And they are a great place where, if they do keep these products in stock, and then allow people to try them out to find if it’s suitable.

Anne Zachry 33:31
Right. Well, and you’re making me think of so many things. So, when you’re talking about an assistive technology evaluation, trial and error is the only way to know if the tech is going to meet the individual’s needs. So it doesn’t matter how much peer reviewed research you have about, you know, this group of subjects in a study. How does that relate to Bob over here who needs this particular problem solved? Is it going to work for Bob, you know? And so … so you have, you know, you … you end up with a study where, you know, N=1, you’ve only got one subject, and … when you’re doing an evaluation … And you’re doing individualized planning, and whether you’re talking about special education, or developmental services, whether it’s through a state DDS or they outsource it to regional centers, it varies from state to state, or you’re talking about the Department of Rehabilitation, which is to employment what special ed is to education. And you’re talking about 18 and older now and adults with disabilities and if sleep deprivation is an issue that prevents them from holding down a job, is this an accommodation that department of rehab might have to buy somebody to keep them employable? And so there’s all and it’s, it’s all individualized planning, everybody gets an individualized plan of something, some kind. So if it’s Regional Center, it’s an individualized program plan – an IPP. If it’s special ed, it’s an Individualized Educational Program – IEP. If it’s Department of Rehab, it has an Individualized Plan for Employment – IPE. But they all start with that “I.” And it’s always coming down to the assessment of that individual person of, “What are your unique needs, and how can we meet them?” And when you’re doing AT evaluations, again, it’s trial and error of, “Let’s try this tech with you and see if you benefit from it.” Then, really the bottom line, that’s the only thing that works in an AT eval. And that’s just as scientifically valid as a-million-and-one research studies about a bunch of random people that doesn’t have anything to do with the one person you’re trying to serve. So I think that if you connect with all of these publicly funded agencies and have to do individualized programming, then your support data is going to come from the instance-by-instance individual assessments of, you know, how many of these individuals benefited from this tech? And what was it about them that made it useful for them? What do they share in common in terms of needs? And what do they share in common in terms of effects? And, then you get your aggregate data from that, but you got to have enough individuals served that way. But I think that might be an interesting way to go. Because you don’t already have to have the published research to necessarily back you up. If you’ve got, I mean, where you’re at right now is sufficient, and the fact that you’ve already got a regional center here in California funding this for someone, and you’ve got these AT assessors from … from, you know, around the country, taking a serious hard look at this from a developmental standpoint. I think that’s huge. And that’s very compelling.

George Bailey 36:35
Oh, I feel very, very fortunate. And the thing, I know, a couple of points to hit number one, our parents are the secret sauce.

Anne Zachry 36:43
Yep.

George Bailey 36:43
They work so hard.

Anne Zachry 36:45
Yep.

George Bailey 36:45
And they make it happen. Like, we’re where we’ve had successes, really, primarily, because the parents pushed for this, they see what we’re doing, they see the value, they have to do the sales, you know, to these institutions.

Anne Zachry 36:58
And they have to enforce the laws with these institutions. I mean, all of these …

George Bailey 37:03
Yes, enforce the law. I love that.

Anne Zachry 37:04
… all of these … the parents are the enforcement arm of all of these civil rights laws that protect individuals with disabilities. It’s usually the family that has to go to bat for an individual who can’t go to bat for themselves. And, and so you, you’ve got the way the laws are written, is that, you know, and this is democracy: Of the people, for the people, by the people. So the way the laws are written is the people are supposed to be able to … you know, advocate for themselves using these systems. Now, how effective that is, is a whole nother conversation. But the way the system is created, it’s … it’s on … the burden is on the family …

George Bailey 37:39
Yes, absolutely.

Anne Zachry 37:41
… to drive the process. And these, these programs exist for their benefit, but they’re supposed to go seek them out and avail themselves of these programs and say here are their needs that need to be met, what do you got, and then when they come to … come with a unique issue that the system doesn’t already have a, you know, a canned solution for, and they’re required to innovate, these institutions are not built for innovation. They’re built for bureaucracy. And so if the burden then falls on the parents shoulders, they go, “Well, wait a minute,” you know? “You’re here to serve us,” you know? “That’s we pay taxes, and we’ve already paid for this stuff. So what are you gonna do with the money you’ve already been given?” And so, you know, it really is … it does fall on the shoulders of the parents, and not just because they’re the secret sauce. It’s because they have to be. You know, it’s how the system is set up.

George Bailey 38:31
As much as I know that there are people out there … my son’s, you know … people who teach him and mentor him and stuff like that. Love him. Take care of him.

Anne Zachry 38:43
Right.

George Bailey 38:43
But none of them … none of them love him like I love him.

Anne Zachry 38:46
Right.

George Bailey 38:48
So you have to fight to be that advocate, but you bring up another interesting point earlier, that just really jumped out to me that is that, on the one hand, you’re totally right, that, you know, what is right for one individual may not be another and yet, we still have a big need for clinical trials …

Anne Zachry 39:06
Yep.

George Bailey 39:06
… for these broader statements. So that we can at least know what could be predicted to work. In other words, those individual assessments if you have to start from scratch every single time, because you don’t have any big picture data …

Anne Zachry 39:19
Right.

George Bailey 39:20
… and it’s very hard for you to be able to say, “Okay, this is what’s gonna work,” or, “We should even try this.” Because every single time that you revisit … you visit an individual, you have to start from scratch …

Anne Zachry 39:32
Right.

George Bailey 39:32
So, big picture, you know, clinical Data, allows us to be able to predict.

Anne Zachry 39:37
Right.

George Bailey 39:38
This study says that 80%, 70%, 90% of people with this condition are going to respond positively to this.

Anne Zachry 39:47
Exactly, it helps you narrow down the field of what to try. Yeah.

George Bailey 39:51
Yeah. At the same time, on the individual level, if your child … turns out that your child gets a full 10 hours of sleep, which is probably what they should be getting at the age of five to 18, or whatever the number is, right?

Anne Zachry 40:08
Um-hmmm.

George Bailey 40:08
Ten hours of sleep, they get that because they bounce the ball 10 times before they go to bed. They’re good. Guess what? if that works for your kid, rock on.

Anne Zachry 40:16
Right.

George Bailey 40:17
I love that. And I love the individualized approach. So there really is value in both sides of that.

Anne Zachry 40:23
Absolutely.

George Bailey 40:25
And then on the other side, one thing that I wanted to add is that, you know, we have these individual customers. Our goal right now as a startup is, how do we early on establish a pattern of gathering data that can tell us more about each of these individuals, and then the aggregate, so that we know with greater certainty, what is still … what is going on what is helping, what is not helping? And I think that it’s very important, you know, I would really urge all startups, anybody in this space, do clinical trials.

Anne Zachry 41:00
Yeah.

George Bailey 41:01
Expose yourself to that. And also do everything you can to get constant customer feedback, because they’re always going to tell you ways that you can improve …

Anne Zachry 41:11
Right.

George Bailey 41:12
… and some can be more shy about it than others but you’ve got plenty who are just, like, “I’m going to tell you my mind. I don’t like this part of your product, but I do like this,” and you will improve.

Anne Zachry 41:21
Right.

George Bailey 41:21
Some of our best improvements came because, you know, I got told by a very frank parent, “I don’t like this.”

Anne Zachry 41:28
Right.

George Bailey 41:29
And, I was really grateful, because then we took those things and immediately said, “We have some changes to make.”

Anne Zachry 41:34
Well, in your … I was gonna say you’re making me think of how it could be done, because how you could get that data, because if you do the individual assessments where you’re matching product to unique individual need, and now you’ve got 50 individuals who have this in their IEP, or their IPP, or their IPE, whatever. All of those documents are goal-driven. So, whenever you do any kind of individualized planning, first, you have to figure out what it is you’re trying to make happen. And then you write a measurable annual goal to that need. So if the goal is is we want Bobby to sleep at least eight hours a night for a full month straight, then that’s your annual goal, that by the end of this year, Bobby is going to be able to sleep the, you know, at least eight hours a night for a month straight. And the progress … being made towards that goal is going to automatically generate data if the goal has been legitimately written … if it really has been written in a measurable manner. And so you’ve got all of these individuals with all of these goals that speak to sleep, and this is the solution that they’re attempting to meet that goal, the data collection is naturally going to speak to the degree to which the device is helping or not. And then when you get enough people who have these devices as part of their individualized plans, and you’ve got this progress towards goal data being collected in terms of how efficacious it is, then you can take all of these multiple individualized reports, and then turn it into a report of aggregate data where you say, “Okay, well, out of the 50 people where we had on these individualized plans, 25% of them have this issue and responded this way versus this or …” you know what I’m saying? So you’re taking the individualized data, and piling it all together to create a body of aggregate data that can then be analyzed. And so you’re taking advantage of both sides of that coin to get valid data. And … and it’s performance based. It’s not hypothetical. So that’s what I was thinking …

George Bailey 43:37
That’s one thing that really, I love. And that is, I want to emphasize to you on the terms that what, folks in the IEP, what I would love is that, I’m going to speak a little bit, because I’m not the IEP expert, okay?

Anne Zachry 43:56
Right.

George Bailey 43:57
But, the thing that I hope that a lot of IEPs take away from this is that, of all of the aspects of a child’s life we’re talking about, this is a pretty critical one.

Anne Zachry 44:08
Yep.

George Bailey 44:08
I’m not saying it’s the most important because I think that each of us in our specialties, we’re all vying for attention, we’re all trying to, “Well, we’re the most important because we’re sleep and that’s 1/3 of your life,” and “We’re the most important because we’re broccoli, and if you don’t eat broccoli, you’ll get cancer!” All of us are competing, but I am here to say that sleep is a critical component of your IEP.

Anne Zachry 44:33
Yeah.

George Bailey 44:33
And, if it’s going great, that’s wonderful, but it should be visited. And that … that’s a hard to find in a professional, in the sense that they at least have to have some fundamental understanding both of its benefits, and maybe some kind of surface recommendations that they can make, at least getting out the gate to, kind of, let’s … let’s take care of some of the things that could be the problem. Let’s find out, for example, your child … Is it dark enough when they’re sleeping? Is it too noisy? Are you watching television until 11 o’clock at night with your child exposed to screens? These types of questions help us to eliminate as factors, possible causes …

Anne Zachry 45:17
Right.

George Bailey 45:18
… what is driving the loss of sleep, and you need to have at least a fundamental, basic understanding of what could be getting in the way of sleep. Now, of course, at that point, you always want to have a good “sleep go-to”; somebody that you go to, “Okay, you know, I’m out of it, I’m out of my depth, I recommend targeting this institution with sleep centers,” …

Anne Zachry 45:40
Right.

George Bailey 45:39
… or something like that. And even then, though, I’ll tell you that I get a lot, a lot of phone calls from parents who said, the sleep center’s, like, given up.

Anne Zachry 45:48
Yeah.

George Bailey 45:49
They just don’t know what to do with this kid. Because this kid defies their kind of expectations for what should be helping the child to get better sleep.

Anne Zachry 45:59
Well, and I would think the sleep centers would want to test your product as well to see if … especially when they’re running into a situation like that. That that should be part of the testing milleu.

George Bailey 46:07
Yeah. Well, this is all the more reason for in-depth clinical trials, to be able to put in front of them, because they will correctly come to us and say, “We expect you to have data.”

Anne Zachry 46:19
Right.

George Bailey 46:20
And I expect that from them. I think that that is good. Now, if they’re so inflexible as to not be helping at all, especially when we already have the pretty heavy anecdotal evidence …

Anne Zachry 46:32
Right.

George Bailey 46:33
… that this is something that should be taken seriously, the aspect of that concept of enclosure, that I think would be kind of negative. But I do expect them to have an academic interest in what it is we’re doing.

Anne Zachry 46:47
I would think they’d be wanting to … helping you do the studies. That they would want to get in on and get published. I mean …

George Bailey 46:52
Oh, yeah. The reality, though, behind studies that we should all here bear in mind is that no matter what you do, you’re going to be spending money.

Anne Zachry 46:54
Right.

George Bailey 47:02
And so, for example, investors and startups, they don’t actually like to spend money on stuff. If you go to investors and say, “I want to raise capital, this amount of capital, $200,000, or whatever it is, is going to go towards a clinical trial.”

Anne Zachry 47:18
Right.

George Bailey 47:18
They’ll say, “Come back to us, once you’ve done the clinical trial.”

Anne Zachry 47:21
Yeah, it’s the same way with nonprofits. It’s like, “We’ll give you a grant, if you can show what you’ve done with the grants you’ve gotten in the past.” I’m like, “Well, now, somebody’s got to be the first one, here.”

George Bailey 47:33
Yeah, so you have to look for people who are very invested, not just financial returns, that you may be able to provide, but the outcome that they actually love the story that you have …

Anne Zachry 47:47
Right.

George Bailey 47:48
… what you’re trying to create. And so that’s where, you know, I agree with you that I would love to have more sleep centers, try our beds to figure out how effective they are. And not just that the tried numerous aspects. It’s not like, the bed’s are effective or ineffective. That’s not really …

Anne Zachry 48:05
Right. It’s like, how are they effective? And what areas? Yeah.

George Bailey 48:09
Yeah, yeah. Or, what about the scent? Is the smell of the space affecting anything? What about the temperature? And so there’s so many variables. We do have the, kind of, virtue of being able to isolate those variables and create some constants that are not really, as easily achieved in normal experimentation. I actually had a really good conversation with Temple Grandin about this, an the thing that she said, that just blew my mind, I would not have been the one to think of this, she’s very …

Anne Zachry 48:43
Oh, her brain is just something else. Yeah.

George Bailey 48:45
It’s really amazing. The thing that she told me … she says, “Every kid who sleeps in your bed, the same sheets, the same mattress …” and then she laid it out, like, “This is what it’s gonna look like,” It’s just like, “Oh, my gosh!” I immediately ran to my pencil and I’m just writing stuff down, going “Thank you! Thank you!” She’s so …

Anne Zachry 49:12
Yeah, the trial is … it’s not comparable if everybody’s not experiencing it under the exact same conditions. You can’t compare one person’s experience to another unless it’s all identical. Yeah, that’s the thing about clinical trials.

George Bailey 49:24
And it was really refreshing to get her perspective on that. I feel she’s very generous with her time.

Anne Zachry 49:31
She is.

George Bailey 49:33
And so that’s one of the things that I like about events is that we can isolate a lot of factors like, look at, okay, so this is one of the things we’re trying to get people to think about as we look at this as a solution is that, imagine every autistic child in the United States and adult. Now, imagine all of their different living situations. Some of them have big rooms, small rooms, most of them probably small rooms, you know, because we’re not all wealthy…

Anne Zachry 50:03
Right.

George Bailey 50:05
… you know? Even the room, the shape of the room, the lighting in the room, the proximity to the city, some sleep right next to the train tracks …

Anne Zachry 50:12
Right.

George Bailey 50:12
… and so to be able to isolate, their kind of like, the … the ideal is really hard to do. And I like the idea that we’re working towards that. And that we … were kind of, let’s give a consistent and predictable environment in which to control for other variables. And then we can start really isolating different variables in a quantifiable way that may be causing some of the more serious issues that we’re seeing.

Anne Zachry 50:44
Totally makes sense. Well, so we’re coming up now on … it looks like almost 50 minutes

George Bailey 50:51
It’s been … every bit, it’s been fun.

Anne Zachry 50:57
I know, this has all been, like, enthralling. So um, but I know that not everybody’s gonna want to listen for like, hours and hours. So I think the big question that people are gonna have after listening to all of this and going, “Well, that sounds really cool. How much does it cost?” So what is the price point that … that parents if they’re interested in looking into this, what are they looking at, you know, in terms of cost? I mean, even if a parent were to lay out money for this, there’s a possibility it could be reimbursed by any of these agencies that have an obligation to their kids. So … but it’s going to require, you know, proof of purchase and all that kind of stuff. I mean, what kind of price tag?

George Bailey 51:33
So we’ve got the bed, as I’ve said, covered in states like Massachusetts, Missouri, Minnesota, Ohio, California, and Kansas, and we’re gonna keep on working on that.

Anne Zachry 51:42
Good.

George Bailey 51:43
We’re happy to kind of advise parents on how we think that can be best accomplished. They come out in June, the new version, because we sold out all of … all of our China inventory.

Anne Zachry 51:55
Wow.

George Bailey 51:55
We have a new Made-in-the-USA version that has upgrades all based on what we heard from parents.

Anne Zachry 52:01
That’s so cool.

George Bailey 52:02
So the new one will cost $5,000, retail. That being said, the first 288, that we’re going to be selling are going to be $2,800 each, and that shipping included on those 288.

Anne Zachry 52:14
Okay.

George Bailey 52:16
So we’re going to cover the shipping on that. The reason why we want to get these out and want to get people experienced … I was gonna say that, we do have financing and such, but the fact of the matter is that if you are invested in trying this for your child, we are invested in finding a solution. We have been very fortunate to get some really great guidance on how to get these things funded, we really want to share that with people. Our website is zpodsforsleep.com.

Anne Zachry 52:48
Right on.

George Bailey 52:50
Feel free to reach out to us because we are so invested in these kids, and we just want to help in any way that we can.

Anne Zachry 52:58
Well, that’s really exciting. And all that being said, I mean, for me as a … as an advocate, someone who goes in and helps families advocate for these kinds of solutions for their children, you know, this is something that we regularly do. It’s like, “This is cost-prohibitive for this family. It’s not like we’re asking for a $2.99 app, you know. This is this is an outlay of cash that is a necessary accommodation for this particular individual.” Then, you know, I know that I can go … these are the kinds of things that I go to agencies for and say, “Look, you know, if it was something easy and out of pocket that this family could do, but this is this is an expenditure. And this is what these public resources are for.” I’m really excited. I’m going to be looking on your website to see what you’ve already got up there in that regard … of how parents can go advocate for themselves to get these things. But I would also want our listeners to know that if you already have an advocate or an attorney that you’re working with, and this is something you think might be appropriate, you would want to involve that person in the conversation as well. Because, they may know, you know, how the system works a little bit better in terms of rules and regulations to help you navigate those sharky waters and overcome whatever objections people might have. Because the agencies don’t want to spend that kind of money either. And they’re going to come back and say, “Oh,” you know, “… you just want us to fly your kid to Hawaii and swim with the dolphins.” And you know, it’s like, “Look, dolphin therapy might be effective, but does it … does my kid needed to learn how to read? No.” And so, you know, there’s, you know, … I’m not, you know, I’m not the person who’s going to go there and try and pitch some, you know, crazy, ridiculously expensive solution just because, you know. We’re not trying to help people milk the system for things that are not what the system was designed for. But in an instance like this where, like you were talking about the one child who was on the verge of institutionalization, well, now you’re talking about least …

George Bailey 54:48
Yeah.

Anne Zachry 54:48
… least restrictive environment, that in all of these programs, the … the commitment is to try and keep people in as non-segregated of a setting as possible, and to keep them as integrated with the rest of society as much as you can. And, you know … and also, when you’re looking at it from a budgetary standpoint, which costs less? A one-time expenditure of five grand, or $8500 a month for a residential treatment facility, and to accomplish the same outcome? And so for those kids who are in that unique boat, I think that this is a serious conversation to be had. Because how many residential placements could be prevented by making the home environment more suitable? When you’re talking about … it’s really about ecological control. And all if for the … in the absence of ecological control, you’re going to pack this kid off someplace and separate them from their support system and their family. You know that … that’s never the best idea. And that’s always the last resort. So if there’s another layer of intervention that can come before that, that can prevent it, that’s always important for everybody in the … in these lines of work to understand and know about … that this could be something that the agencies understand this is far less expensive than what the alternative is for some of these individuals. And it certainly is far more compliant and less segregationist. And so for everybody involved it’s a better solution, if that’s the case. And so I think that this is something that other advocates and attorneys need to be paying attention to as well, that this is something they could potentially be asking for if it suits the need. And if so, only an individualized assessments going to answer that question. And …

George Bailey 55:03
And I would be happy to talk with any of those attorneys formulating strategy sessions. It’s kind of our joy, to be able to help. It is funny, but I’ll leave you with one last story. I know that we’ve talked a long time … about two months ago, I was helping a mother and I was in a hearing. I was not allowed to speak. They were asking about, kind of, like … they’re looking for any sort of other low-cost, you know, a solution and this mom had tried everything.

Anne Zachry 56:52
Right.

George Bailey 56:54
Finally, the, kind of, opposing counsel, or whatever you want to call him there, was saying, “Well, this is … it’s just changing their environment. That’s all that they’re doing. Why not change the room?” Like, “You can get … the room doesn’t need to be that …” Something like that. I was just thunderstruck …

Anne Zachry 57:11
Yeah.

George Bailey 57:12
… by what I was hearing. I was like, “You’re literally advocating that this woman move rather than just paying for the cost of the bed?”

Anne Zachry 57:19
Right. Oh, yeah. It’s like, “How can …” All the things I see. The stories I could tell, trust me. I mean, that’s like the tip of the iceberg. And, and it always comes back down to, “We don’t want to …” It’s a “not out of my budget” mentality.

George Bailey 57:36
Yes!

Anne Zachry 57:37
It’s not out of my budget mentality. You’re …

George Bailey 57:39
Very short sighted.

Anne Zachry 57:41
… very short sighted. I mean, these are the same kinds of people who would rather criminalize a behavior and stick a kid in juvenile hall than pay for a BCBA to come in and provide a behavior program. And it’s like, well, you know, “Even though it’s going to cost the taxpaying public 10 times as much with, like, far more abysmal results to put them in the juvenile justice system, at least that’s like coming out of my budget.” And it’s like, “What? You’re gonna go home and pay taxes for that? Do you not understand this coming out of your personal budget?” And it’s just the lack of wisdom. And so it’s like, how did you get this job? You and I are encountering some similar issues just coming at it from a different perspective. And it this has been a very enlightening conversation, this has given me a lot of things to think about. I’m going to have an ADHD spin-off in a minute, and, you know, a-million-and-one ideas are going to pop in my head. But well, thank you very much for doing this with me today, I think we’ve covered a lot of ground. And this is a lot of information for people to digest, I will very, definitely make sure that I’ve got links to all of your stuff, you know, it’s going to be something going to be sharing with the other professionals that I work with as well, so that they are aware that this is even an option. And as we encounter these kinds of things in the field, we now know, we have got this potential tool in our toolbox that we can at least attempt to see if it’s going to work. I mean, again, trial and error when you’re talking about technology.

George Bailey 58:57
You never know, but when it does, it really rocks. And, seeing the changes that we see, like, we’re talking about four hours of sleep a night; all of a sudden, ten hours of sleep.

Anne Zachry 59:06
Oh yeah, any kind of … any kind of change you can make with respect to sleep problems is always usually pretty noticeable pretty quickly. And so, you know that part of it, that’s the proven science is that improving sleep quality improves a whole bunch of other stuff. So really, it comes down to, you know, where does your product fit into improving sleep quality? Not, you know, so you don’t have to prove the sleep quality issue. It’s just you … it’s about, you know, showing how your product fits in with it. So I’m excited to see this and if you get some Airbnbs and stuff like that they’re willing to take these on, yeah, share us the links for those guys, too, because we’ll put that out there for people to go and check it out and try it and see what they think.

George Bailey 59:45
Absolutely. Thank you …

Anne Zachry 59:46
Thank you.

George Bailey 59:48
… so much! More than anything, it’s been fun.

Anne Zachry 59:50
Well, thank you! It has been. It has been. Well, much appreciated.

George Bailey 59:55
Thank you.

Anne Zachry 59:55
You’re so welcome.

Anne Zachry 59:57
Thank you for listening to the podcast version of, “Interview of George Bailey, President of ZPods. KPS4Parents reminds its listeners that knowledge powers solutions for parents and all eligible children, regardless of disability are entitled to a free and appropriate public education. If you’re a parent, education professional or concerned taxpayer and have questions or comments about special education related matters, please email us at info@kps4parents.org or post a comment to our blog. That’s info at K as in “knowledge,” P as in “powers,” S as in “solutions,” the number 4, parents P-A-R-E-N-T-S dot O-R-G. We hope you found our information useful and look forward to bringing more useful information to you. Subscribe to our feed to make sure that you receive the latest information from Making Special Education Actually Work, an online publication of KPS4Parents. Find us online at KPS4Parents.org. KPS4Parents is a nonprofit lay advocacy organization. The information provided by KPS4Parents in Making Special Education Actually Work is based on the professional experiences and opinions of KPS4Parents’ lay advocates and should not be construed as formal legal advice. If you require formal legal advice, please seek the counsel of a qualified attorney. All the content here is copyrighted by KPS4Parents, which reserves all rights.

Posted on

Mysterious Special Ed Accountability Report Published in California

On January 13, 2022, after staying up late to finish my last post/podcast, I woke up to find a message in my inbox from the CAPCAA listserv that included a very comprehensive-looking report published by a group referring to itself as “The Office of Administrative Hearings Special Education Task Force,” with the email address of oahspecialedreport@gmail.com. The members of this task force are not identified in the report. The report identifies its authors as follows:

Authors/Contributors: This accountability report is provided by the Office for Administrative Hearings Special Education Task Force, a coalition of concerned attorneys, advocates and parents. Many of these contributors conducted research, collected and organized the information, and assisted in the writing of this report.

Bias, Noncompliance and Misconduct In Special Education Due Process: An Accountability Report on the California Office of Administrative Hearings Special Education Division, January 2022

Given the degree of retaliation that anybody calling out the California Office of Administrative Hearings (OAH) could easily face in the current anti-democratic climate of American politics, these days, I can’t say I’m entirely surprised that the individuals responsible for this report have not named themselves in it. That could be really a good way to find some “good ol’ boys” burning crosses in their yards and planting pipe bombs in their hedges on behalf of some tax-fattened, suit-wearing carpetbaggers.

So, I can’t discount the report for lack of identified authors. That leaves nothing but the content of the report with which to judge its legitimacy, but that’s almost better. It’s like a blind audition on The Voice; it doesn’t matter what you look like if you have a good voice. What you have to say and how you say it matters more than what your name is or what you look like. So, that’s how I’m looking at this report.

In these troubling times, I’m willing to accept verifiable facts from anonymous authors truly fearing for their own safety if they dare to speak the truth. I will not accept unverifiable assertions being openly spewed by people saying whatever will get them attention. So, let’s examine the assertions being made by this report.

This Task Force’s report follows a professional format for organization and presentation of its information, but it’s not a legal brief or scientific paper. Not every assertion is supported by black-and-white evidence, but the assertions not supported by evidence are nonetheless consistent with those assertions that are supported by evidence.

Additionally, because I work extensively in the very areas of concern targeted by this report, all of it rings true with the experiences that I’ve lived as a professional over the period of time discussed in this report. That which is not outright supported by evidence in this report is nonetheless credible to me given the evidence that is presented and what I already know to be true from real-life experience.

While anecdotal accounts were added to the report to bolster the authors’ positions, the identity of those offering these accounts are unknown, so verifying them is impossible. Again, concerns about retaliation and privacy are legitimate, so I don’t want to discount the privacy concerns of the authors, but one of the first rules of proving the veracity of a document is authenticating its content with its authors. That’s just a basic rule of evidence. At some point, for this document to be taken seriously by regulators and/or legislators, its authors will have to reveal themselves.

Putting aside the authorship issues for the moment and delving into the actual content of this report, what this report is basically asserting is that OAH, which is a division of the California Department of General Services (DGS), is organizationally compromised relative to its obligations to try special education cases pursuant to the Individuals with Disabilities Education Act (IDEA). The report supports these arguments with references to a collection of publicly available documents.

These arguments appear sound and supported by credible evidence, in my opinion. Of particular note to me were its references to the November 15, 2021 study conducted by CDE titled, California Special Education Governance and Accountability Study, as well as news that the courts finally resolved the issue of continued distance learning for medically vulnerable children on IEPs. This latter issue affects one of our families and I’ve been waiting to hear about this situation.

The Task Force’s assertions in its report are also consistent with my experiences dealing with OAH since it took over the hearings in 2005. In fact, I first became a paralegal in 2005 and witnessed the very shenanigans reported by the Task Force with the change-over from the Special Education Hearing Office (SEHO) to OAH that same year. It was a dumpster fire inside of a clown car that had crashed into a train wreck, to put it mildly.

OAH underbid SEHO in terms of the costs of conducting special education mediations and hearings by failing to include the costs of administrative support and sending mediators and judges around the State to handle each case in its local community, which allowed OAH to come under SEHO’s bid by several million dollars, as memory serves. The moment it opened its doors for business, it was already millions of dollars over-budget from what it had bid to get the business from SEHO.

The quality of the judges from OAH was atrocious out of the gate. One then-new judge went down in California special education parent/student legal history for the angrily and stupidly stated words, “Ms. [Attorney], what does autism have to do with behavior!?!”

When you have people who have no idea what anybody is talking about deciding the futures of children who have no voice of their own in the process, those of us who are trying to protect these children become almost as powerless as the children we’re trying to protect. We were, and continue to be, faced with people entrusted with responsibilities that are clearly light years beyond their actual skills and knowledge, and the authorities and powers that go with those responsibilities.

What is the point of having the rule of law if the people responsible for enforcing it are personally incentivized to break it or are otherwise too dumb to know how to enforce it? We’re paying these people to implement the regulations, not to invent excuses as to why they don’t have to and bully the rest of us if we dare to question them.

I’ve been saying for the last 30+ years that special education issues are civil rights issues, and if our babies aren’t truly protected, then none of us really are. The national political landscape appears to support my conclusions, not that I’m happy to be right about that. Marginalized groups with specifically identified protected rights are always the first ones targeted by fascists, so special education is really a “canary in the coal mine” when it comes to American democracy. Clearly, we’re not doing that well and this Task Force is seeing a lot of the same things I’m seeing.

Regardless of the authorship issue, which I suspect will be resolved in due time, the evidence cited in this report and the consistency of what it describes with what I live and breathe everyday inclines me to treat it as credible, though if anyone can find an inaccurate assertion in it, please post a comment and let me know. At minimum, another federal investigation is warranted based on this report, but I don’t know that going to the U.S. Department of Education’s Office for Civil Rights (OCR) is the right way to go, now.

As the report discloses, there was already an OCR investigation in 2014 of the California Department of Education (CDE) as it pertains to making its hearings accessible to individuals with disabilities. I won’t repeat the anecdotal account of what that was all about, here; you can read it yourself in the report. But, I warn you, it’s upsetting. I wish I could say it was too outlandish to be true, but it sounds just about right for OAH and CDE, based on my own experiences.

Last year, just to give you an example from my own caseload, I filed a compliance complaint with CDE against a local school district for failing to implement all of a student’s IEP during the pandemic-related shutdown. The most critical element of the complaint was the district’s failure to provide in-person 1:1 aide services, as required by the child’s IEP.

Instead, the district put the aide for this non-verbal, inattentive, prompt-dependent child with autism on Zoom, requiring the child’s mother to be the in-person aide helping her child access Zoom, constantly cueing him attend to the online instruction, and prompting him through all of his work tasks to completion. The aide could only sit there, staring at them through the screen, completely useless … at taxpayer expense.

The aide was willing to provide in-person support and the non-public agency (NPA) that employed the aide was ready to send her to the student’s house in a mask for in-person services during distance learning, but the district wouldn’t permit any in-person services during shutdown. This single parent ended up selling her condo and moving, with her children, in with family friends, in no small part because she couldn’t work a paid job while sitting at home serving as the free aide for her child with special needs throughout each school day while the paid aide sat in her own home on Zoom, unable to do her actual job.

This was a blatant violation of State and federal law that the district kept blaming on the county’s health department. I challenge anybody to find a legal authority that gives a county health department the authority to tell a school district that it doesn’t have to abide by the IDEA. After attempting to get the district to do the right thing by way of written correspondence and the IEP process to no avail, I filed a regulatory complaint with CDE.

CDE opened an investigation based on what I alleged through its complaint intake unit, but then the investigator subsequently assigned to the complaint materially altered the nature of the investigation and cited the district for a different violation of the law than what I had originally alleged, and failed to issue a finding regarding the original allegation I’d made about the aide. The investigator’s findings then went to yet another unit within CDE that developed the order for corrective actions, which included compensatory special education instruction for lost service minutes, but it was silent regarding aide support during those compensatory services.

Think about this for a minute. I alleged in my complaint that the district failed to provide aide support during distance learning. The intake unit opened an investigation in response to my complaint based on the allegation of the district’s failure to implement the IEP as written, specifically with regard to 1:1 aide support. The investigator found that the district failed to implement all of the instructional minutes in the IEP, but issued no finding regarding the 1:1 aide support. The corrective actions unit ordered compensatory instruction to make up for lost service minutes, but there was no mention of aide support.

Once corrective actions have been ordered by CDE and its findings are sent out to the parties, the offending education agency has to provide proof of corrective actions to yet another unit of CDE. When I called that unit to get clarification as to whether the compensatory service minutes were supposed to include the 1:1 aide support called for by the IEP, that unit’s response was, “Yes.”

The offending district’s attorneys (definitely of the Rudy Guilliani/Syndey Powell variety), however, said, “No.” They then tried to fight with CDE over whether or not the compensatory service minutes had to include the same 1:1 aide support the student required throughout the school day in every other instructional setting, as per his IEP, likely billing the district by the hour the whole time.

What ensued turned into an internal feud within CDE. The unit at CDE responsible for collecting proof of corrective action from the district insisted that, because the IEP called for 1:1 aide support during any and all instruction, it was understood that 1:1 aide support also had to be provided during the compensatory services ordered. But, not everybody involved with the investigation at CDE agreed.

What I came to suspect was that the investigator and legal department at CDE had deliberately steered my complaint away from its original allegations for presumably fiscal and/or political reasons. It certainly had nothing to do with CDE abiding by its obligations or making the district comply with the law. It had absolutely nothing to do with protecting the educational and civil rights of a little boy with autism who can barely talk and needs an aide to access his education.

Reading through this Task Force’s report, I’m now seeing that experience again through new eyes. The argument the CDE is fiscally motivated to find it does nothing wrong and neither do its districts, regardless of the facts, as asserted by the Task Force, resonates with me as true.

Another compelling argument asserted by this report that also rings true for me is that DGS exists for the purpose of cutting costs, not ensuring the State’s compliance with federal mandates or protecting the rights of citizens. The report further argues that, as an integral part of DGS, OAH also exists for no reason other than to control costs and not to protect the rights of California’s citizens. As such, the Special Education division of OAH is not organized in a manner consistent with the requirements of the IDEA that special education hearings and mediations be conducted by impartial parties whose only function is to protect the educational and civil rights of students with disabilities.

A State employee who is being told their primary function is to save money should not be in charge of making sure the State abides by the IDEA. It’s an outright conflict of interest, which this Task Force asserts in its report. This isn’t just a philosophical assertion; it’s a regulatory requirement. The IDEA requires education agencies to design and implement individualized programs of instruction that confer appropriately ambitious educational benefits upon each student according to his/her/their unique circumstances, regardless of cost.

A State agency that exists to cut costs should not be making programming decisions in situations in which it is unlawful for cost considerations to be used to determine who will get what. That, to me, explains a lot of the hyper-Republicanism (in the present-day fascist sense of the term, not the former “Party of Lincoln” sense of it) going on in California’s special education system.

And, I’m willing to go out on a limb and say that, back in 2005, right-wing grifters were responsible for giving the special education due process business back to OAH. One of the sleaziest special ed law firms there ever was, which happened to be the largest special ed law firm representing school districts in California at the time, was Lozano Smith. It was instrumentally involved in getting the due process hearings switched to OAH in 2005. All of this came on the heels of No Child Left Behind (NCLB) in 2004, which resulted in changes to the IDEA. Those changes created an opportunity for anti-student and anti-parent forces to lobby for changes to how California handled its special education matters, from changes to State law, to changing who enforced the laws from SEHO to OAH.

However, in 2005, something else big happened involving Lozano Smith, right after OAH took the special education hearings back over. Lozano Smith will live on in infamy, at least in my mind, for decades to come following two public displays of anti-democratic behavior.

The first was its epic 2005 faceplant in the matter of Moser v. Bret Harte Union High Sch. Dist. (366 F. Supp. 2d 944 (E.D. Cal. 2005)), which made the news. The second public example that stands out in my mind was its 2014 amicus brief to the U.S. Supreme Court opposing protections for special education students under the Americans with Disabilities Act (ADA) in the matter of K.M. v. Tustin Unified Sch. Dist., 78 F. Supp. 3d 1289 (C.D. Cal. 2015). This second example didn’t steal headlines, but the actual outcome of the case was huge for students with special needs regarding their disability-related communication needs.

If special education advocacy has been the “canary in the coal mine” of American democracy, Lozano Smith has been one of the Mitch McConnell-esque specters of obstructive fascism that has been trying to snuff the voices of “canaries” like me for decades. I’m convinced that every single unrepentant person who had a hand in the Bret Harte mess and anything else like it will have a special place waiting for them in Trump Tower Hell, when they die; perhaps it will be named the Lozano Smith Suite.

In the present, all of the concerns raised by this Task Force’s report are grounded in the realities I deal with every day. The fact that the authors fear to reveal their identities is also grounded in the harsh reality that the fascists aren’t even trying to hide the fact that they are coming for us, anymore. Anybody who stands up for civil rights, these days, is a target, and I realize that includes me just by saying so.

Here’s the thing, though. Those of us accustomed to dealing with special education issues who understand Applied Behavioral Analysis (ABA) also know an Extinction Burst when we see one. So long as those of us who see this Extinction Burst for what it is continue to abide by our professional ethics, stand our ground, and stick to the applicable science and rule of law, none of the self-serving histrionics of those with anti-democratic tendencies within our government will overcome our fact-based arguments. We have to keep acting like we live in a democracy or it stops being one.

We may lose battles on occasion, particularly in those States currently permeated by maskless, unvaccinated seditionists spreading COVID as readily as their lies, but the only way we lose the overall initiative is if democracy fully collapses in the United States. All of us “canaries” need to start beating our wings and squawking loudly as the voices of experience when it comes to fighting fascism within America’s government, or it’s curtains for all of us.

It’s not shocking news to any of us that the fascists are targeting local government, including school boards, as a means of seizing control of the country. That’s nothing new! That’s what all of us working in special education advocacy have been up against since the original laws that protect our children were passed in the 1970s. To the rest of the Country, it’s unfortunate that it’s now happening to you, too, but we welcome you to the front lines and look forward to working with you to win this soft civil war currently being fought over basic rights and the rule of law in America.

To our colleagues fighting similar battles on behalf of other marginalized groups, we look to unify with you. When it comes right down to it, those of us who exist in marginalized groups collectively outnumber the few individuals at the center who put us in their margins.

In a democracy, majority rules. The minority of individuals who want to rob the rest of us of our rights cannot oppress a unified majority. Special education rights are human rights, just like ethnic rights, gender rights, sexual orientation rights, relationship rights, etc. If all of us whose rights are being infringed upon join forces instead of competing for the crumbs that fall from the would-be oligarchs’ tables, we can be sitting at the table eating meals full of freedom with everybody else, instead.

Posted on

A Discussion of Instructional Apps with Zafer Elcik of Otsimo

The following is the written transcript of the audio recording of my interview of Zafer Elcik of Otsimo, which you can listen to in the podcast version of this post. This transcription was aided by Otter.

Zafer Elcik – Otismo

SPEAKERS

Anne Zachry, Zafer Elcik

Anne Zachry

Thank you so much for being in this podcast with me today. I really, truly appreciate you making the time, especially since we’re having to accommodate international time zones, and I’m here in the United States and you’re in Turkey. If you don’t mind, could you just go ahead and give us just a brief introduction of yourself and your product?

Zafer Elcik

Thank you for taking the time to talk with me. My name is Zafer. I am co-founder of Otsimo. At Otsimo, we are developing apps for kids with special needs, mostly for autism, Down Syndrome, and mental challenge. What we are trying to do is to provide early intensive education to the mobile devices and the speech therapy, as well. I have a brother with autism. He has been vulnerable for a long time. And I realized that he has special interest in smart devices one day, but I couldn’t find any suites or apps for my brother. The typical apps have a lot of advertisements, as well as, like, they have a lot of sounds, animations, and so on, and my brother actually liked to play with them, but he ended up with a bad situation. I decided to create app companies just helping kids on the spectrum. Well, right now we have kids all across the US, UK, as well as Turkey. We have already met the Minister of Education of Turkey. We reach education and speech therapy all across the world through the mobile device.

Anne Zachry

That is so cool. That’s such a powerful outcome to make happen. That’s such an accomplishment. That’s so cool.

Zafer Elcik

Thank you.

Anne Zachry

Oh, thank you. So well, one of the things that because we’re here in the United States, and we’re constantly advocating for kids with special needs to get the services they’re supposed to be getting and the supports that they need. And, very definitely, the whole issue of alternative communication methods and kids who have language impairments who can’t get their words out, but that doesn’t mean they don’t have words … I mean, I’ve worked for over 30 years with kids with every kind of disability you can imagine, and lots and lots of kids on the autism spectrum with language challenges, but also across all age groups. And, so one of the things I wanted to ask you about – because I did download and install your app and mess around with it, so I could become familiar with it – the graphics and the imagery, and the age ranges that look like on the app max out at like seven and older. And, for my kids on the spectrum who are middle school and high school age or young adult age, they don’t see themselves necessarily in the apps, and the tools that are are out there for children who are younger. And, the accommodations they need evolve over time as they get older, and they may still have the language skills of a very young child, but they are still a teenager on the inside. And, so, my question to you was, “Is there … are there plans to expand the app to have a version that is more grown up and more adult looking and more age appropriate for teens and young adults that will follow them into college?” Because I’m seeing kids who everybody thought they would never go to college. But once they get the help was like “Oh, hey! That’s a possibility for you, now …”

Zafer Elcik

Yeah.

Anne Zachry

… but these tools can’t follow them necessarily. And so my question to you is, “Are you looking to expand it to for to make the tool something that will support older users, especially as your kids get older … your child users?”

Zafer Elcik

Yeah, actually, it’s a great question, because my brother is getting older and older. And, we try to test with my brother as well to what the level will be of the new content in the app. Like, at Otsimo, we approach early and intensive education, because, like, you heard a lot of the time that you know it, like, if the kids can get early and intensive education, it affects our …

Anne Zachry

Right, right. Those are my kids who are now growing up and going to college, who, when we first started when they were four and five years old, that wasn’t even a thought. But, now that they’re 18, it’s like, “Oh my gosh! Look what you can do!”, because we got all those services when they were little.

Zafer Elcik

That’s because, like, I realized that, in the US, as well as in Turkey – I mean – a lot of countries in the world, because, like, we have a lot of users all across the world, and we realized that, like, getting a diagnosis and, then after that, getting the first education is a really big hassle. Like, in the US, as well, like, you need to go to IEP meetings …

Anne Zachry

Yep.

Zafer Elcik

… to get what you need, and it’s a big hassle and you lose a lot of precious months, sometimes a year, to just getting the education. That’s because we, at first, we focused on the, like, really early and intensive skills, like, small hand gestures, or social skills, and so on. But, after that, we really found out that we need to create content for a really diverse community. That’s because, like, right now we have more than 100 games, some of them is really easy, some of them is kind of middle school-ish. But we haven’t, like, created, like … I can set it up, like, we … our apps are at pre-K to K-2, but after K-2, right now, we don’t have real content. That’s because, right now, we are developing new content every month, just to keep updated. I don’t think so we will create content for university or high school and so on, but I believe it’s so go we can go to like pre-K to K-8, and so on, in the near future. We will have a lot of content for that.

Anne Zachry

Right. Well, definitely the early intervention is a huge part of it. I mean, that’s certainly important. And, you know, my background is also in educational psychology. That’s what my master’s degree is in. And I can tell you from an instructional design standpoint … but, also I’ve worked in IT. I’ve worked it … I can do some coding, it’s not my greatest skill, but it’s not like I don’t have any coding skills at all. I understand what it takes to build something from scratch in code. And you want to start with the simpler skills and move into the … progress into the more complex skills, anyway. You know, that those simpler younger skills are foundational, not only for human beings, but also for technology. So, you build on that not only with the kid, but with the tech over time, I would imagine. So, that totally makes sense.

Zafer Elcik

Yeah. Right now, we are developing these apps for more than five years, and still, I believe that we are in the, like, really beginning.

Anne Zachry

Right.

Zafer Elcik

We have more than 20 people. Like, we have psychologist on team. We have educators, developers, designers, testers. A lot of people lately, designers working with us, and so on. And it takes a lot of …

Anne Zachry

I can only imagine. I mean, I’m just trying to envision what all the logistics are of making something happen, you know, like what you’re doing. And, it’s just … you know, what you’re doing is moving the earth. That’s huge. And you said something a moment ago that …

Zafer Elcik

Thank you.

Anne Zachry

Thank you … that really caught my ear, and that was, you know, the diversity within the autism community. And, we have a saying over here that, “When you’ve met one person with autism, you’ve met one person with autism.”

Zafer Elcik

Yeah.

Anne Zachry

Because, no two people with autism are alike, you know. Just like everybody else, that no two brains are alike, even if they have a common disorder. And so, how it manifests … and I’ve got, you know … and this goes to my next question is, you know … I’ve got situations out here where we have students with IEPs that will say in the IEP that they’re supposed to have an AAC device, with hardware and software loaded on it, but they won’t specify what they’re using. They won’t name the device and they won’t name the software in the IEP, as though all AAC tech is interchangeable. And, it’s not! Each technology is different and nuanced, and every student has to learn that piece of technology as a way to learn language. Like, if you start a kid out on ProLoQuo2Go, and then you move that kid to another school, and they see that, “Oh, well. You’ve got an an AAC device with some kind of software in your IEP. We have to implement your IEP that you came in with, but we don’t know what you were using.” And they’ll go off and get, you know, a Samsung smart pad with some kind of who-knows-what software installed on it. And it’s not the iPad with the ProLoQuo2Go the kid knew how to use from the last school. And so, what happens is their language gets taken away. And so, I guess my question to you then becomes, “If there’s other technologies that are going to be used as these children get older, like ProLoQuo2Go, going into the adult world, do you think that it’s wise to start them off on something different and then switch them, or does it make more sense to get them accustomed to one piece of technology and have it carry them through, or does it make sense to teach them more than one type of AAC tech so that if one goes out of business, the other one’s still around?” I mean, that’s my concern. It’s about the people in the public schools who tend to think that AAC technology, if they’re not specifically trained in it, they think it’s plug-and-play, and you can pull one out and push another one in. And, I wonder what your feedback on that what would be.

Zafer Elcik

Yeah, my feedback on that, like, is, we have also AAC solution in our special education app.

Anne Zachry

Right.

Zafer Elcik

We are targeting mostly young children instead of, like, ProLoQuo2Go or other AAC devices as well. And I believe in … so, like, we need to introduce the AAC to the people and individuals on the spectrum as soon as possible, because, like, we have a lot of research also going on there. AAC actually doesn’t have any disadvantages to learning a language. It also have advantages to learning language or concepts of vocabulary, and so on. I believe … so, we need to, we need to show the AAC in really early stages, because it’s helpful for them. And the second thing I need to say: We need to find a way to, like, a different kind of solution. Like, sometimes you need Tobii Dynavox with a eye-tracker device on it …

Anne Zachry

Right.

Zafer Elcik

… and so on, and sometimes you need also some AT with a light reading cue and open source system with you. I think that, like, the schools doesn’t … like, schools must not mandate an AAC over others. They need to accommodate the diversity, the diversity of different assistive technology. That’s because, like, I also came across some schools, like, they’re using just one tech and they don’t want to change, but it doesn’t help anyone. Like, it just helped the teachers, maybe the managers there. It doesn’t help the kids and the family. Because I think that, like, teachers also have a lot of goals, as well, because of the … I don’t want to say that, but, like, teachers need to accommodate the diverse kids …

Anne Zachry

Yeah. Right.

Zafer Elcik

… diverse problems or … the diverse solutions of the kid, and find a way to use the … what the kids like, what the individuals like. Because, like, communication is essential, and when you are changing a device, you’re actually changing the whole communication system. And, you force them maybe to voiceless.

Anne Zachry

Right.

Zafer Elcik

And that’s a huge drawback for diverse communities. That’s because, I believe it. So they don’t need to see a lot of different AAC, but they need to stick with what they feel comfortable.

Anne Zachry

Right. It’s doesn’t do any good to teach a kid how to speak using the tool and then take the tool away from them. And…

Zafer Elcik

Yeah.

Anne Zachry

… and that’s our concern. And that, again, goes back to how special education is legally regulated here, because you can’t just go and change things up once it’s written into the IEP. That’s a legally binding contract that the parents can hold the school to that says, “Hey, these are the things you’re supposed to do for my kid.” But if the contract itself is flawed, if the what it describes in writing is not appropriate, then that’s what’s enforceable. And, what we run into is … Yes, I agree with you that you have way too many school districts that will standardize on a particular technology, because they get bulk discounts. If they buy in bulk from the vendor, they get it less per unit.

Zafer Elcik

Yeah.

Anne Zachry

And so, it’s cheaper to get multiple licenses of a particular AAC and a particular device because they can buy those in bulk, because all of these vendors have realized that they can sell more in quantity to the schools if they can convince them that their technology will solve all these problems. And, for a lot of kids it will, but you have to specify what it is in the IEP. Because, if a kid has started out, say, on your technology and it’s part of what’s being done in the classroom, if it’s not written into the IEP, and that child moves to another area, and that IEP has to follow them to the new school, but it doesn’t say in there … that they were using your technology, the new schools not going to know to put that in. And so, what we run into is sort of a mixture of too vague of a description of the accommodation, as well as what you were talking about, what is sometimes is over-specified to the point where there’s no flexibility to try anything new.

Zafer Elcik

Yeah … Yeah.

Anne Zachry

So, you don’t … you have to strike a balance where there’s enough flexibility with the way the document is constructed that trying out new technologies is not prohibited, but what the child is familiar with is also not taken away. And so, it comes down to the wording of the document. And I think that that’s something that a lot of solution developers find frustrating when they enter into the American special education system because they’re thinking, “Oh, America loves special ed! They actually have laws and they make it free and they do all this stuff!” But, when you actually try to participate in it, it looks a lot different to live through it than it looks like on paper. Yes, there’s an embracing of it. But there’s also all of these rules that get in the way of actually doing something about it, sometimes. And so, sometimes the rules are there to help, and sometimes they get in the way. And I think that, especially as an international developer, for you coming in to try and insert your product into that kind of situation and have been successful, that’s enormous. Because that’s not an easy thing for anybody to do. And for you to come from outside of the country, and insert yourself into such a heavily regulated situation, with a solution that people are actually adapting and accepting and using, I think that’s huge. So that’s … congratulations on that. That’s enormous.

Zafer Elcik

Actually, like, the system in the U.S. is changing by state-by-state. And that’s because like, maybe it’s district-by-district.

Anne Zachry

Yeah.

Zafer Elcik

You are right. They’re involved in that kind of stuff. We here are actually trying to be a company like family-friendly, or special individual-friendly. What we try to provide is an additional value. Like, they can pick what they want. Mostly … most of the other companies, like there are big corporations in the U.S., like, they are selling bulk, but they don’t update the software for a long time or doing anything like that, specifically.

Anne Zachry

That’s true. Right.

Zafer Elcik

That’s because, like … and also, some states and district doesn’t … they need to cover by IEP by law, but they have a lot of that system. That’s because kids couldn’t reach out for, like, the AAC they need.

Anne Zachry

Right.

Zafer Elcik

That’s because we try to find a way to be an affordable and accessible solution for all families, instead of, like, binding the districts or states to just forcing them into one single product. But, you are also right. On the other side, if the kids started some sort of specific AAC, I think, I believe it, so they need to follow the same system in the other schools or other districts because, like, they learn how to communicate through that. Like, it’s something like you learn in English in one nursery; while you carry on your school, you need to … you’re forced to talk in French and …

Anne Zachry

Right.

Zafer Elcik

… it’s impossible for you to actually … it’s something like that.

Anne Zachry

I agree.

Zafer Elcik

… take a special tech from their hand just because of the bulk discount or so, but it doesn’t help anyone.

Anne Zachry

Right.

Zafer Elcik

It’s helping the … maybe the district managers and so on.

Anne Zachry

Exactly. And that’s a lot of what we run into is … we run into administrators who spend zero time in the classroom, who are business office people making decisions that affect the classroom based on finances, which is illegal, but it happens all the time, because they don’t know any better. They don’t realize their decisions are going to have that big of an impact on a kid. They’re not even thinking about that because their business office people. And so, that’s I think it’s … we’re running into an issue over here with respect to how the bureaucracy is organized. It was created during the Industrial Revolution and emulates a factory. And, even though modern business technology has evolved well beyond that, public education technology has not. Public agency technology has not. The public sector, our government agencies, are decades behind technologically speaking, which I’m sure you’ve encountered with all of their different business systems …

Zafer Elcik

Yeah, yeah.

Anne Zachry

… and things and accounting systems and was like, none of them are running the same operating system. None of them are running the same software. So, it’s a highly disparate situation. And it kind of reminds me when I was working in IT years ago, around the, like, the late 1990s, early 2000s. I went through that whole Y2K thing … and … when I was working in IT. And, at the time, the customers that I had for the company I worked with were mostly in the freight forwarding business. And, it was when U.S. Customs was switching to paperless. And, my goodness! The pandemonium and chaos that broke out amongst all of the people who handle paperwork for shipping goods back and forth overseas. I mean, this was all a paper driven processing, and now Customs wanted to go paperless, and it was something. And, nobody had the same operating system. Nobody had the same software. But, everybody’s stuff was somehow supposed to magically talk to U.S. Customs electronically. And, making that all come together over the span of like five to seven years was outrageous. But at the same time, I see that now happening in public education where we’re finally starting to reach that place where we’re just going to have to deal with it in do the upgrades. And, I think that once the upgrades get done, and we get to a more cohesive modern system, that it’ll be a lot easier because … we have better technology being implemented in the classrooms than we having implemented in the business offices. And, I think that that’s a lot of the problem is that we have this antiquated bureaucracy responsible for teaching modern children. And so, we have all these innovators like you bringing technology in, but what’s it supposed to integrate with? It’s like a green cursor on a black screen or an amber cursor on a black screen. I mean, some of the tech is so old. And so, I know that you’re having to go in and blaze a trail in a place where, you know, in a space in an industry where technology is not as easily as embraced as it is in other places. So that’s another thing that you have to be proud of yourself for, because it’s another accomplishment, to be able not only to come into the American market, with all of the regulations involved, but also just all of the backwards technology that you’re going to have to overcome. And so you’ve really taken on something that’s enormous. You know, I have one last question. I have a young man on my caseload that I’ve been with for a very, very, very long time, and he’s severely, severely, severely autistic. But he’s even more severely intellectually disabled. I think the intellectual disability gets in his way more than the autism does. But, when he was much younger, he was very self-injurious. And he would hit his head against very hard surfaces, like floors, and roads, and walls and …

Zafer Elcik

Yeah.

Anne Zachry

… and so he was a head-banger. And, he would hit himself and he would hurt other people. And, it was because he couldn’t get his words out. And, when he would speak, people wouldn’t take him seriously, because he did a lot of scripting. So they didn’t listen to anything he said, even when he was trying to speak for real. And so, it got to the point where the behavior became his method of communication. And it took a long, long time; he had to be institutionalized to break him of that habit, and teach him to use his words again, and to get him to, you know, where he could be more functionally communicative without engaging in these violent behaviors. Unfortunately, in the course of all of this before I, you know … by the time I got involved with him, a whole lot of harm had already been done. And he had managed to, as best as we can tell, detach his own retinas from head-banging. So, now, he’s permanently blind.

Zafer Elcik

Oh, wow!

Anne Zachry

He hit his head so hard that he blinded himself, or at least that’s what the doctors are saying, because he just … all of a sudden, his retinas peeled off the backsides of his eyeballs and he couldn’t see anymore, and, so, you know, and it was after years and years of head-banging against really hard surfaces. And, his school would … they didn’t know what to do with him, so they would just put them in a seclusion room and leave them in there to whack his head on the wall for 45 minutes at a time. And, needless to say, there was a lawsuit. And, you know, we got compensatory services for him. But what we can’t do with him, now, is teach him to use a traditional AAC or any kind of device-based technologies where, you know, all these wonderful things like what you created, because he doesn’t have eyesight anymore. He can’t see the screen.

Zafer Elcik

Yeah.

Anne Zachry

And so, you know, we’ve had him evaluated by experts to help figure out what we can do for this guy, you know. And, he’s now my friend. I love him to death. He’s my sweet little lamb. He … I mean, I don’t have any behavior problems with him. But, here he is now, you know, as a young adult finally starting to say, “Okay, well, I think I want to have a life and do something with myself,” and the tools and the resources are so now limited for him because of the eyesight loss, because everything for autism was all about visual schedules and visual cues.

Zafer Elcik

Yeah.

Anne Zachry

And, you know … and I can’t do that with him. And so, what we’ve had to do is, I create tactile schedules for him where I take dollhouse miniatures, and I glue them on a great big piece of foam board. And, I make like a visual schedule, but instead of looking at it, he’s got to touch each item, and it moves through a progression so that he can, you know, follow the flow of what it is we’re going to do. And once he learns the routine – once he gets that ritual down – he knows the order of events, I don’t have to use the schedule with him anymore, because he already knows what’s coming. Now he knows the routine. But, to teach him new schedules, I would have to glue together $200 worth of dollhouse miniatures off of Amazon onto a piece of board to give him an idea of what was about to happen. And, what I’m not seeing … and so, I’m kind of putting it out there, hopefully you’ll … this is something you can think about … are tools for individuals with autism who are also blind or are deaf and have these sensory impairments on top of the autism that makes the typical solutions inaccessible to them. And just your your thoughts maybe of what you think might be a good way to go in terms of adapting a device for use with someone. Like, I can see if someone has hearing loss … hearing loss, you could do vibration. You could make the device vibrate …

Zafer Elcik

Yeah.

Anne Zachry

… in the absence of sound. But when for someone with vision loss, I don’t know how you replicate a visual schedule, other than to just audio record yourself, like in the voice recorder, you know, just speaking your way through it. I’ve done that, too. But it doesn’t seem to be as powerful as a tactile schedule. And I’m curious as to, you know, when I talk to developers, what do you think about that? What do you think could be done for someone who’s got multiple disabilitiees and the autism is just one of many?

Zafer Elcik

Yeah, it’s a nice question. Like, we also came across like, people with hearing disorders with autism, and so on. We try to make our product as much as accessible for that. I don’t know, literally, like, because we are not doing visual schedules. I don’t know, in specific people region schedule basis. But for the Apple devices, there is, like, assistive disability techniques. And I know that, for example, ProLoQuo2Go has a system. You can actually use the switches or you can … they will actually scan the screen with them. But, you need to teach them this assistive tech on the Apple devices to the kid. And, I believe it, we are also … there will be our apps right now. I can’t say we are 100% accessible for vision problems, or hearing problems and so on, but you can use that assistive settings in the settings in Apple devices. And, combined with that assistive settings with the apps like us or ProLoQuo2Go, or if you’re using a visual schedule app, you should reaching out to developers and saying them, like, “Could you implement assistive settings to our device on your app, because we are using it for for this, this this?” And, that’s the only chance I can see from my point of view …

Anne Zachry

That stands to reason.

Zafer Elcik

Apple has a great assistive settings for people with vision problems, as well as hearing problems. That’s because, if he or she can use them assistive techniques while using the device, apps also can be a part of it and you can use that settings in the specific apps, and you can just scan the screen instead of picking seeing regionally, and so on. You will see here what you, like, the device actually loudly saying that what they’re clicking, and they can actually talk thanks to that, while just memorizing what they were seeing. That’s doable and a lot of companies are doing but, yeah, it’s a one more additional step of teaching.

Anne Zachry

Is it like an API where you if you’re a developer, you could reach out to Apple and say, “Hey, we want to link in with your accessibility tools. What’s the code?”

Zafer Elcik

Yeah.

Anne Zachry

Okay.

Zafer Elcik

Yeah, it’s kind of an accessibility feature. You use that kind of specific codes in your app. At times, too, the Apple accessibility feature actually can be used in the app as well. The name is … or … you can use voice over, or you can use in the voice over settings. You have, like, Braille alphabet, as well as, like, the others. And also hearing devices can be connected to the Apple devices and you can use for specifically hearing disorders and so on. That’s because like, the settings if the app using that specific API or SDK, for just specific assistive technology settings, you can use it in the app as well. And Facebook, Google, using these APIs a lot. You can test it out there. You can see how they … how it’s working. And if you’re using one, we just schedule it out. You just reach out to developers and say what you want. That I believe in, so they will implement it in near future.

Anne Zachry

That’s a really good point. I know that one of the colleagues that I work with who I’ve actually have involved with this student in the past to teach independent living skills, she herself is blind. And she … her whole house is an Apple smart house at this point, because she’s become so dependent upon the Apple technologies to … as her accommodations …

Zafer Elcik

Yeah.

Anne Zachry

… but it’s interesting you would say that because the first time I introduced the two of them to each other, we met at a restaurant in the community that is entirely staffed by individuals with mental disabilities. And, we were there to meet each other – for him to meet her – and I went inside to go get the menu. And, there was a line! And, I had to wade through a sea of people before I could even get the menu to bring it back out to him and read it to him and ask him what he wanted. And my colleague had already looked up the menu on their website, and had her phone read it out loud to the both of them so that, by the time …

Zafer Elcik

Yeah.

Anne Zachry

… I got back outside with the menu, he already knew what he wanted.

Zafer Elcik

Yeah. Like, Apple devices are expensive, but Apple as a company, really pro assistive technology. That’s because, like, they devices are best in case for using that kind of technology.

Anne Zachry

Right, they’ve got the most experience working with this kind of stuff; they’ve been doing it longer. And well, it just for the for the benefit of our listeners who are hearing this conversation, I mean, here in the United States, if you if you’re on the autism spectrum, especially if you have other disabling conditions, other developmental disabilities, you’re also going to be eligible for services from Department of Developmental Services. And every state has a Department of Developmental Services. Now, again, federal regulations that come down from the top, just like special education law, but then how each state …

Zafer Elcik

Yeah.

Anne Zachry

… implements the federal regs varies from state to state. And so with Developmental Services, some states, the DDS is its own thing, and you just go to the DDS office and that’s who you deal with. It’s the state agency, and they have offices in different communities around the state. But in California, and in other states, it’s a little bit different, where you have what’s called regional centers. And, regional centers are non- … here in California, are non-profit organizations that contract with California’s Department of Developmental Services. And, their function is to provide anything that someone with a developmental disability needs above and beyond what any of the other generic agencies have to do. So, for example, for a child who’s in, you know, K-12 age, the school district is going to have the primary responsibility for meeting their needs in terms of publicly funded programming for people with disabilities. But if there’s anything that doesn’t have to do with school, like afterschool childcare, or social skills in a non-school setting, like a Boy Scout troop, or something like that, there’s services above and beyond what the school is obligated to do, those things fall to regional center. So, if a child gets an iPad with your technology – with Otsimo – loaded on it, for example, at school, that’s only for school. If they need to be able to use it to communicate with people outside of the school day, they need a second separate iPad that they keep at home and take out into the community, and that’s regional center. Because the school’s …

Zafer Elcik

Yeah.

Anne Zachry

… only responsible for what happens at school, or anything to do with homework, you know, anything that’s school related. But, if it’s beyond that, if it’s just life in general, now, you’re talking about regional center. And, for our individuals who have graduated from high school with a diploma or aged out of special ed, and now they’re young adults and they’re going out into the world, regional centers and the Department of Developmental Services are obligated to serve these people their entire lives, not just when they’re children. So, if someone is using an iPad with your technology, or ProLoQuo2Go or anything else, and then they’re no longer a public school student – they’ve grown up, they’ve gone on – but they still need that iPad with that technology on it to communicate with people, then they have to go back to DDS, or regional center, depending on how its configured in their state and say, “Okay, well, this is a life functional skill thing for me. This is an activity of daily living. If I don’t have this device, I don’t have a means of communicating with people.” And so, the laws very definitely protect their communication rights. And so, it falls on a different agency to purchase that equipment. It doesn’t automatically fall on the shoulders of the families to come up with all this money to buy all of this tech. There’s public dollars out there for it. Just, people need to know which agency to go to for which circumstance. If you’re talking about someone who is an adult who’s looking to get a job and needs to have this technology to communicate in order to be employed, well, now you’re talking about the Department of Rehabilitation, which is also federally funded and also regulated under the same bodies of law as special education law on a federal level. But again, every state does it different. Some states will roll their Department of Developmental Services and their Department of Rehab together as one solid agency that takes care of both of those responsibilities. Where others, like in California, DDS it’s its own thing and it’s got its regional centers, and the Department of Rehabilitation is a completely separate entity that you have to go to separate from everybody else and go ask for their help. And so, getting all of these different agencies that each may have an individual responsibility to one person can be a lot, but any one of these agencies could end up having to finance the technology, the communication device and software, that these individuals would need. And so, I’m just putting it out there not only for you, but for our listeners, that there’s more than one way to get the job done, and if one avenue is not appropriate for an individual, there may be another avenue that is, and that could still make your technology accessible to people outside of just the schools, even if they can’t afford to buy it personally. And so, I just, you know … Yes, I want my families who can afford it, they can just go straight there and get it. It could even be something they could get reimbursed on by the schools, if they buy it themselves because the schools haven’t given them anything appropriate, and that ends up working for them. And so, there’s a lot of different ways here in the United States where families can access these tools, including your technology, even if it’s not through the public schools.

Zafer Elcik

Yeah.

Anne Zachry

There might be another way to do it. So I just wanted to put that out there. Have you worked with any other agencies other than the school districts out here?

Zafer Elcik

Not yet. But we will like to working with agencies and so on. Right now, we are on track to complement …

Anne Zachry

I think what I’m going to do is I’m going to share your information with, here in California, we have First5, which is an early childhood intervention program, separate from the schools, but it works with them, sort of, but it’s separate. And, it is all early intervention. And, very often they’re the ones making the referrals.

Zafer Elcik

Yeah, that would be awesome.

Anne Zachry

Yeah, they’re the ones often finding out, especially when you’re talking about children from low-income, non-English-speaking families, immigrant families … they don’t know what to look for necessarily, or, even if they see something’s up, they don’t know what to do.

Zafer Elcik

Yeah.

Anne Zachry

Very often, First5 will be the one that catches it and makes the referrals and gets these kids into the appropriate supports and services. And so, this is the kind of stuff that they’re going to want to know about. So I’m very definitely going to share it with them. And, then I’ll also have it on our website and everything and I’ll put it out there on our social media.

Zafer Elcik

So, I forgot to mention we have also a Spanish version, as well.

Anne Zachry

Ooooh!

Zafer Elcik

Many families are using our apps in U.S., is reaching out to special education.

Anne Zachry

Oh, that’s huge. That’s enormous to know. I’m excited to see what your project is going to be doing as it expands use through here in the United States, and as it evolves over time. I’m going to be putting links to it on our … on this … the post for this podcast. Wanted to ask me about anything?

Zafer Elcik

No, thank you for your time. Like, it was a nice coffee talk with you. Like, I haven’t imagined that, like, we are going to talk in this prophetic situations, and how I am thinking about it. It was nice questions. It was the one of the best questions I ever ask. Thank you for that and thank you …

Anne Zachry

Oh, of course! Thank you!

Zafer Elcik

… for your time and showcasing our product, as well as me. Happy to see you in two years, three years after this podcast, out with the new products focusing on adults on spectrum. That will be really awesome!


Click here to see Zafer’s TED Talk

See how disability rights advocacy and smart device-based interventions can put evidence-based practices into the hands of the people, regardless of whatever rules and regulations may apply (or not) where they live.

Go into the video settings on YouTube to turn on English or other language auto-translation.
Posted on

Amazon Gift Card Contest

Win an Amazon Gift Card from KPS4Parents

KPS4Parents will be giving away a $10 Amazon eGift card on March 31, 2022!

It’s easy to enter to win.

https://www.patreon.com/posts/ask-anne-episode-56535240

Just watch this introductory video for Ask Anne and post a special education-related question below or on this video’s post on Patreon at https://www.patreon.com/posts/ask-anne-episode-56535240.

You can also submit your questions for Ask Anne at https://kps4parents.org/home/anne-m-zachry-m-a-ed-psych/submit-your-questions-to-ask-anne/.

Ask Anne is a patron-supported program on Patreon in which KPS4Parents’ CEO and lead advocate and paralegal, Anne M. Zachry, M.A. Ed Psych, answers questions submitted by parents of children with special needs, professionals who work with special education students, advocates and attorneys for children with special needs, and others with questions about how publicly funded special education is supposed to work.

With more than 30 years of field experience advocating for children with special needs, designing and evaluating individualized educational programs, supporting attorneys in special education and disability-related complaints and litigation, and filing complaints with state and federal regulators, Anne has insight into the technical requirements, evidence-based practices, and public education agency politics.

Give us a good question for an upcoming episode of Ask Anne by midnight Pacific Time on March 30, 2022, and you could win the $10 Amazon eGift card.

Only serious special education-related questions will result in contest entry. The winner will be chosen at random from valid entries and announced on March 31, 2022 at 5pm Pacific Time. Selection of questions are at the sole discretion of KPS4Parents.

All questions actually used in upcoming episodes of Ask Anne will include a shout-out to those who asked them plusHonorable Mention shout-outs to up to 10 people who asked great questions that didn’t quite make it into each episode.

The winner, the individuals whose questions are used in our upcoming episodes, and our Honorable Mentions will all also receive a handwritten note of thanks from Anne. We hope you find this an engaging way to get answers to your special education-related questions and look forward to answering your questions in upcoming episodes of Ask Anne.

Submit your valid special education-related question to us for consideration and entry into this Amazon eGift Card Giveaway. There is no limit on the number of entries per participant, so long as each entry is a unique, legitimate question specific to special education appropriate for Ask Anne.

To view past, present, and future episodes of Ask Anne, subscribe on Patreon.

Posted on

Getting Help with Post-Shutdown IEPs

Download a PDF of the written transcript of the audio from this video by clicking here.

In this video, Anne summarizes how the IEP process is supposed to work in the first place, then how that process applies to students with special needs in preparation for returning to school in the Fall 2021 semester following pandemic-related school closures.

Parents can get the information they need to successfully advocate on their own in many situations. If you are dealing with complex violations of the law and need extra help, Anne explains the types of services and referrals we provide to parents and colleagues to help solve these kinds of problems.

Don’t start next school year without a strategy! We’re here to help.

Copyright 2021, KPS4Parents

Posted on

“Long COVID” Cognitive Impairments and Their Implications for the Special Education Community

Photo credit: Marco Verch

On July 22, 2021, The Lancet published an article by Adam Hampshire, et. al., in which the findings reported that COVID-19 causes long-term cognitive impairments among many of those who have been ill with it, particularly those who have been hospitalized with severe forms of the illness and those diagnosed with COVID-19 but not hospitalized. I won’t rehash the entire article here. Follow the link to read it for the details.

In today’s post/podcast, I’m summarizing the findings of this body of research and discussing their implications for the special education community. First, let’s look at what the cognitive impairments caused by COVID-19 can look like, and then we’ll talk about what this means for the special education community.

This research by Hampshire and his team specifically found: “[The] results [of this study] accord with reports of ‘Long Covid’ cognitive symptoms that persist into the early-chronic phase. They should act as a clarion call for further research with longitudinal and neuroimaging cohorts to plot recovery trajectories and identify the biological basis of cognitive deficits in SARS-COV-2 survivors.”

So, basically, there is evidence to support that if a person gets sick with COVID-19, they can experience cognitive impairments that last a long time, perhaps permanently, and further research is needed to understand the long-term consequences of millions of Americans having their cognitive functioning reduced by COVID-19. For our kids about to go back to in-person learning, the questions become about whether they will end up subjects in that research after getting COVID-19 and experiencing cognitive impairments, and what will be done to benefit them if they are affected in such a way.

The symptoms, specifically, were reported by Hampshire and his team as: “… colloquial reports of ‘brain fog,’ … low energy, problems concentrating, disorientation, and difficulty finding the right words.” Further, there is evidence that “… COVID-19 patients can develop a range of neurological complications including those arising from stroke, encephalopathies, inflammatory syndrome, microbleeds, and autoimmune responses,” any of which can cause brain damage or impairment.

As children face returning to school as the Delta Variant of COVID-19 rages through unvaccinated populations, including children under 12 who are not eligible for vaccination, all parents in their right mind are worried about their children getting sick. The risk of long-term cognitive impairment during the critical learning years of child development and/or permanent brain damage are now yet more reasons for parents to want to keep COVID-19 far, far away from their children.

The sad reality is that a lot of children in areas of the country with low vaccination rates, many of which are communities compromised by poverty and reduced access to resources in the first place, are going to get COVID-19, and a fair number of those that survive are going to experience cognitive impairments as a result. This means a whole new cohort of children entering special education who otherwise would not have required it, thereby increasing the special education burden of every local, state, and federal education agency.

For those children already on IEPs who get sick with COVID-19 only to be further cognitively impaired by it, we’re going to see changes in their present levels of performance that make their current IEPs no longer appropriate to all of their needs. They are likely to experience regression and an increased need for supports and services in their IEPs, meaning yet another increase in the burden on local, state, and federal education agencies.

This is, of course, preventable with appropriate safety measures. The problem is that we have some local and state leaders doing everything they can to spread the disease, banning mask mandates in our public schools, for Christ’s sake! We have millions of unvaccinated children expected to co-mingle in crowded spaces that will become super-spreader sites that induce cognitive impairments among the students who are there for the purpose of enhancing their cognitive abilities.

And, it’s the same conservative leaders who are pushing to ban mask mandates in schools who will refuse to fund their students’ special education services when they come back to school with cognitive impairments later on. Parents can fight together now to prevent their children from becoming cognitively impaired, or at least more impaired than they already are, by pushing for appropriate safety measures in our public schools, or a smaller but significant number of them can fight later on for special education services for their children who experience “Long COVID” and resulting neurological impairments.

Aside from the obvious lingering health problems that children who experience and survive COVID-19 can have, which will require ongoing care that parents previously weren’t having to provide, there are the added complications of learning problems that will require parents to exhaust themselves further to pursue. Special education was already falling grossly short of the mark, but we’re now in the process of creating the next large population to blaze a litigation trail across the judiciary with special education cases: COVID-related impairments.

As it stands, regardless of the symptoms, if a student who survives COVID-19 ends up with long-lasting health and/or cognitive problems that interfere with access to learning, the fact that it’s the result of COVID-19 could cause that student to meet criteria for “Other Health Impairment (OHI),” under special education law [34 CFR Sec. 300.8(a)(1)]. It’s not like a new eligibility category would need to be created.

The special education world went through similar chaos during the 1990s when Attention Deficit Hyperactivity Disorders (ADHDs) first became understood and widely recognized as an actual set of conditions. The University of California, Los Angeles (UCLA) ran a great big study on ADHDs. I remember attending a panel discussion by individuals who had participated in the study back in the day.

Back then, ChADD (Children with Attention Deficit Disorders, as it was known back then), was big on the advocacy scene while litigation went forward in the courts to determine if kids with ADHDs were eligible for special education. The ultimate outcome was that there didn’t need to be a separate eligibility category for ADHDs because they were captured by either the Specific Learning Disability (SLD) or OHI categories, depending on how each affected child experienced it.

Back in the early 1990s, I went to a speaking engagement at which the founder of ChADD, who was also one of the parents taking this landmark litigation forward, described the favorable outcomes the litigation had achieved, but also how awful it was to have to go through all of that and how vindicated his family felt in the end, particularly his child with ADHD.

I see the same thing happening here with kids who will be disabled by COVID-19 to such a marked degree that they require special education and related services in order to access education, and kids who already needed special education who will now become even more greatly compromised than they already were after surviving COVID-19. Plus, I see this happening the most in the states and locales least likely to protect their children against COVID-19, which are also the states and locales least likely to comply with special education law.

Far right politics have undermined the success of special education at the local and state levels since special education law was created. In fact, the laws that protect our children with special needs were created in response to these far right political efforts to deny them access to education. The situation has literally become life with permanent disability or death for far too many of our children, and still the public scrutiny on the right wing fuckery that goes on in public education has not become intense enough to change the broken system.

How much more broken will the system become when it has killed a percentage of its students and permanently disabled yet another percentage who will now require special education when they didn’t before or who will now need more intensive special education above and beyond what they were previously getting? At what point in the future will all of the associated costs created by neglecting our kids now finally matter enough for the tax-fattened hyenas that are undermining public education from within to realize it’s in their best political interests to actually protect and educate their students?

Political extremism in any form will derail the most sensibly created system, but public education was not sensibly created for the present times and the political extremism has always been part of it. Many have the misconception that public education stopped serving as an arm of the Patriarchy once it became a female-dominated profession. But, there is nothing professional about a bunch of “Karens” sitting around a table passing judgment over a single, low-income mom of color with a kid who has a mental health disorder and related behavior problems instead of helping her and her child.

Thankfully, the field is changing and we have more scientifically-minded people entering special education, but there are still a lot of the old cronies hanging in there for as long as they can before grabbing their pensions and running off into the sunset, leaving all kinds of poorly educated, if not traumatized, children in their wake. This country is going to through a reckoning in which ethics and the rule of law are at the heart and soul of it all. Ethics and the rule of law have always been the heart and soul of special education disputes, and I can only see what is happening on the national level as an expansion of what I’ve been fighting for the last 30 years.

The thing that also is getting lost in this debate is the impact of “Long COVID” on teachers, specialists, and administrators. How does inducing cognitive impairment among a public education agency’s personnel serve the public good? How is that an appropriate employment practice for any employer? Why are we willing to impair the minds meant to sharpen the minds of our children? How is this self-preservation as a species?

As a tough old broad who has already seen the kinds of bullshit these people can pull, and given how much bullshit the American public is starting to realize can happen within our supposedly democratic government based on what is now coming out about the 45th President’s attempted soft coup d’etat following the 2020 election, I don’t think I’m being hyperbolic or alarmist when I point out the travesty we’re creating for ourselves in increased special education expenditures by failing to prevent childhood cognitive impairments as a result of “Long COVID.” I’m hoping this message isn’t falling on deaf ears.

Posted on

Using ABA Principles to Navigate the IEP Process

Photo credit: Joe Loong

One of the things I’ve been trying to get across to people for years is the understanding that Applied Behavioral Analysis (ABA) is a science, not a special education service, much less a service specifically for students with Autism Spectrum Disorders (ASDs). The confusion arises from the fact that instructional strategies and behavioral interventions based on the principles of ABA, which work with all learners, just so happen to also work for students with ASDs and often it’s the only approach that does.

As such, the demand for ABA-based programs for students with ASDs, and the peer-reviewed research around its efficacy with this particular population, has resulted in confusion among the lay public as to what ABA actually is. Because so many people in public education and the families that rely on it only see ABA used with respect to ASDs, they think that’s all it’s for, and this is a gross failure on the part of the professionals who know otherwise to set things straight.

This is why I’ve been trying to get this point across for so long. Knowledge powers solutions for parents, which is the whole reason our organization exists. The absence of relevant knowledge on behalf of any of the stakeholders in the IEP process can prevent students with disabilities from getting the kinds of help they actually need, so a failure to appreciate that ABA applies to anyone or anything that behaves can have dire consequences for students who would benefit from ABA-based interventions, even if they have conditions other than ASDs that create these needs.

That’s a whole conversation unto itself, but that’s not the focus of this post. Because ABA applies to anyone and anything that behaves, it therefore applies to all the members of a student’s IEP team. For parents, the science of ABA can be not only constructive with respect to developing an appropriate IEP for their children, but also in navigating the behaviors of the other IEP team members during IEP meetings and related exchanges with public education agency personnel, which is what I’m focusing on in this post.

To be clear, ABA is not a method or strategy. It is a way of describing behaviors according to how they naturally occur. When it is used to make something happen, it’s all about how to interact with others in a way that promotes the behaviors we want to see from them. Used ethically in a team context, it keeps conversations productive and collaborative. However, the proverbial snake oil salesman “selling ice cubes to Eskimos” abuses ABA as part of a con to manipulate people’s behaviors for personal gain at other people’s expense.

The thing to understand is that ABA is a reality-based approach to understanding what is going on and planning what to do about it. It isn’t an invention; it’s simply a tool that measures what already is. That data can then be used to change how things are. So, it’s not like I can give you a checklist of things to do, whether you understand them or not, and you’re off and running. You need to understand the underlying science, which I’m going to grossly oversimplify here to make the concepts as digestible as possible.

Before I launch into what ABA is, I first have to back up and explain the three key tenets of science. Science relies on:

  • Determinism – an understanding that there is a logical, evidence-based explanation for everything in existence.
  • Empiricism – an understanding that every evidence-based explanation can be described in quantifiable terms using fixed increments of measure.
  • Parsimony – the understanding that the simplest explanation that fits the measured evidence is the correct explanation.

That’s not an ABA-specific thing. That’s how all science works, and ABA is a science.

Like a financial audit, science renders reality down into measurable bits that can be analyzed for black-and-white, yes/no answers, regardless of what is being discussed. There is a reason that “accounting” and “accountability” share a common root word. Financial audits examine accounting records for accuracy because those records are supposed to account for where money has gone or will go. For this reason, accounting is actually a science.

All other forms of science account for things the same way, measuring what is according to fixed increments of measure and giving us an accounting of what is really going on. Such is the case with ABA.

The increase of neo-fascism in America, in which science is frequently denied, is really a rejection of accountability and/or a significant detachment from reality consistent with mental illness. It’s about skewing numbers (like the 45th President attempting to offload COVID-infected cruise ship passengers at the beginning of the pandemic onto Guantánamo Bay so as to prevent the numbers of infection cases in the United States from going up) or otherwise pretending the numbers are untrue (like “The Big Lie” told by the 45th President regarding the vote count in the 2020 Presidential election), so as to avoid being held accountable.

Science is all about explaining reality using numbers, which requires the application of mathematics. There’s only one right answer to a math calculation. It never ceases to amaze me the number of people who grasp this concept when it comes to money, but not with anything else.

These are generally the kinds of people who own profitable businesses and use their money to hire private jets to fly to Washington, DC, so they can attempt to violently overthrow our government because they fear accountability and equate any perceived loss of privilege or unfair advantage with oppression. Oppressed people can’t afford private jets, in case you were wondering. These are also the kinds of people who end up in handcuffs over cooking their companies’ books, once the accountability finally catches up with them.

When you understand science as a form of accounting for anything that exists in numerical terms, just as with money, it isn’t possible to take it as an affront to your belief system, unless you believe things – or are trying to convince other people to believe things – that are not true. There is no rule that says we have to like the truth.

An intact person will acknowledge an undesired truth and deal with it. A person engaging in disordered thought will attempt to argue against it and assert beliefs unsupported by evidence as fact, thereby confusing opinion with fact and arguing against what they don’t want to be true as though it really isn’t.

As a parent going into the IEP process, you need to stick to the facts. An IEP is all about measurable annual goals that describe what your child is supposed to be taught and how to measure the degree to which your child learns from that instruction. Services are determined on what is necessary to achieve the degree of success targeted by the goals and placement is determined according to what setting(s) are the least segregated from the general education setting in which the services can be delivered such that the goals are met. The entire process hinges on the appropriate application of the relevant sciences.

As a parent, know going into the IEP process that it is scientifically driven and, therefore, relies on measurable facts to inform your child’s educational planning, plus it must do so according to the rule of law. The whole system was designed with the education agency’s accountability to the individual student and the student’s family in mind, which is why it boggles my mind every time I encounter anything but that in the IEP process.

Specifically with respect to using ABA to navigate the behaviors of the other team members as a parent attempting to exercise your federally protected right to meaningful participation in the IEP process, there are some ABA-specific concepts you first need to understand. The first concept is that of ABC data collection and the second concept is that of reinforcement.

ABC data collection is a process used to determine the function(s) of a specific behavior. The “A” stands for “antecedent,” the “B” stands for “behavior,” and the “C” stands for “consequence.” Each of these has a specific operational definition in ABA, and any deviation from their respective definitions means whoever is taking the data is not actually practicing ABA.

An antecedent in ABA is whatever happened right before the behavior that triggered it. When you’re talking about students, the presentation of a task demand can be the antecedent to a challenging behavior being addressed by an IEP, for example. When you’re talking about corrupt and/or incompetent public agency officials in an IEP meeting, the presentation of a parent request could be the antecedent to some kind of challenging behavior displayed by educational agency personnel, as another example.

The behavior in the ABC data collection process is the actual observable behavior being addressed. In the example involving a student just given, let’s say the challenging student behavior upon the presentation of a task demand involving a worksheet, is verbal aggression while tearing up the worksheet. In the example of a difficult IEP team member, let’s say the challenging behavior upon the presentation of a parent request is a bunch of hyperbolic excuse-making and changing the subject.

The consequence in ABA data collection is the immediate outcome produced by the behavior, specifically the pay-off the individual gets by engaging in it. This is an important distinction because it is often inaccurately reported in school-based behavior assessments, where the previous century of relying on a punishment model of behavioral intervention regards “consequence” as something meted out by staff. That is wholly inaccurate. Anything the staff does in response to the behavior, whether it works or not, is a “reactive strategy,” not a “consequence” within the meaning of ABA.

The point of identifying the actual consequence achieved by engaging in the behavior is to determine the function served by the behavior for the individual engaging in it. Once the function of the behavior is understood, you can choose how you want to respond to it in a constructive way. When you don’t know the actual function of someone else’s behavior, you can respond to it in a way that hurts more than helps the situation. Identifying the function of an inappropriate behavior is entirely necessary before an evidence-based approach can be developed to address it.

So, using the examples I just gave, let’s say that the consequence of the student engaging in verbal aggression and tearing up the worksheet upon the task demand being presented is to escape/avoid the task demand. With respect to an IEP team member engaging in hyperbolic excuse-making and changing the subject when a parent makes a request, the function of the behavior is to escape/avoid addressing, much less honoring, the parent’s request.

In both of these examples, the function of each of the hypothetical behaviors described were both escape/avoidance, but this is not the only function a behavior can serve. Behaviors happen for only one of two reasons: to get something or get away from something.

As such, behaviors can be reduced to a one or a zero, depending on whether its function was to get something (1) or escape something (0). Even the most complex behaviors can thus be reduced down to simple binary code as the most parsimonious way to describe what is happening.

In ABA, the functions of a behavior are typically described as access/attainment, escape/avoidance, and automatic. Automatic reinforcement speaks to behaviors that address internal drive states, such as physical wellness and emotionality, but even those are based on access/attainment or escape/avoidance. Sensory-seeking and/or sensory-avoidant behaviors are based on automatic reinforcement for someone with sensory processing issues based on their unique neurology, for example.

That leads us to the second key concept of ABA that you need to understand, which is that of reinforcement. A reinforcer is anything that increases the likelihood of an individual engaging in a specific behavior in response to a specific antecedent. If the consequence of the behavior is reinforcing, the individual will continue to engage in it whenever that specific antecedent is presented in order to achieve the reinforcer.

For example, if you get hungry (antecedent) and go put money in a vending machine and push the right buttons (behavior), you will get food (consequence). The function of the behavior is access/attainment of food to satisfy your hunger. It’s pretty simple.

Reinforcement can be positive or negative, but these are not judgments of “good” or “bad.” Just as with magnets, the poles of the Earth, and batteries, the terms “positive” and “negative” have specific meanings within ABA that are also frequently misunderstood in special education behavioral interventions. In reality, when it comes to ABA, “positive” means “to present” and “negative” means “to withdraw.”

Positive reinforcement, therefore, is the presentation of something that is likely to reinforce a specific behavior. Negative reinforcement is the removal of something unwanted in order to reinforce a particular behavior. The aforementioned vending machine scenario gives an example of positive reinforcement because food is presented in response to the behavior of putting money into the vending machine and pushing its buttons. Both forms of reinforcement were best explained scientifically back in the early days of behaviorism by B.F. Skinner using what came to be referred to as a “Skinner Box.”

In Skinner’s positive reinforcement experiments, rats in a cage were taught to pull a lever in order to access food pellets. At first, pulling on the lever was accidental, but as soon as food came out, the rats quickly learned that engaging in the behavior of pulling the lever resulted in the presentation of a food pellet. The presentation of the food pellet reinforced the pulling of the lever.

In Skinner’s negative reinforcement experiments, rats in a cage with an electrified floor that delivered mild shocks to their feet learned to pull a lever in order to turn off the electrification of the floor. Again, at first, pulling the lever was accidental, but as soon as their feet were no longer getting zapped, the rats quickly learned that engaging in the behavior of pulling the lever resulted in the termination of discomfort caused by the electrified floor of the cage. The removal of the electrification reinforced the pulling of the lever.

In both cases, the behavior of pulling the lever was reinforced. It’s just that one form of reinforcement provided access to something preferred and the other removed something aversive. Again, this can all be reduced to getting something (1) or getting away from something (0).

In the IEP process, you’re either getting what you want for your child or you are not. The public education agency personnel are either satisfying their agency’s agenda or they are not. The whole situation is riddled with ones and zeros depending on what you are talking about and who is involved.

Again, this is all a gross over-simplification of these basic ABA concepts. There are other considerations that have to be taken into account, such as setting events, otherwise known as Motivating Operations (MOs). MOs increase the likelihood of a specific antecedent triggering a specific behavior.

In our previous example regarding the student becoming verbally aggressive and tearing up a worksheet upon the task demand being presented, it could be the case that the student normally complied with task demands but, that particular day, the student had a stomach ache and didn’t have the concentration and stamina to engage in the task when it was presented. As such, the antecedent was still the presentation of a task demand, but that antecedent occurred in the presence of the MO of a stomach ache, and the consequence was still to escape/avoid the task demand.

Similarly, in our example previously regarding education agency personnel engaging in hyperbolic excuse-making and changing the subject in response to a parent request for something, it could be the case that said personnel would have normally agreed to honor the parent’s request, but that morning there had been an agency budget meeting in which personnel were told they would be subject to disciplinary action from the agency if they committed the agency to services for students that cost more than a certain amount, which is illegal but nonetheless happens all the time. As such, the antecedent was still the parent request, but it occurred in the presence of the MO of a threat of disciplinary action against agency personnel for committing the agency to costs it didn’t want to have to bear, and the consequence was still to escape/avoid honoring the parent’s request.

Sometimes you don’t know what all the MOs are because the education agency personnel won’t make them known to you. In many instances, the only way you know something is wrong is because the presentation of an antecedent results in a behavior that produces a consequence that doesn’t fit what should be happening. In that case, you know something is wrong because the behavior doesn’t fit the situation, at which point you have to ask yourself, “What is the function of this behavior?” It’s pretty obvious that any “no” response you receive is an escape/avoidance behavior; it’s just sometimes hard to know whether what is being avoided is cost, accountability, or both.

For example, data collection practices in special education throughout the country are generally pretty unscientific and shoddy in spite of a federal mandate that special education be delivered according to the peer-reviewed research, which is all scientific, according to measurable annual goals. As black-and-white as the process is supposed to be, it often isn’t because school personnel 1) have no idea how to do it correctly, and/or 2) are attempting to avoid accountability.

In most cases, it’s been my observation that the initial inappropriate behaviors are a consequence of incompetence, which creates a need to pursue accountability, at which point they engage in cover-ups to try to avoid getting into trouble for the errors of their ineptitude. You have to assume as a parent going in that not everybody on your IEP team knows everything they should and that they may respond unethically when they get called out on their errors. In other situations, public education agency personnel are just grifting the system for a government paycheck at taxpayer expense from the outset and see students as a means to their own financial ends, engaging in cover-ups when their self-serving behaviors become exposed.

As a parent going into the IEP process, you have to be a shrewd negotiator. If you don’t understand the functions of the behaviors of the other IEP team members, you are at risk of being robbed blind by unethical public servants and/or otherwise getting a poorly developed IEP from inept public servants.

It’s not on you to know all of the science and law that applies to your child’s situation, but if you can develop your skills at reading the behaviors of the other IEP team members, you can often figure out whether they are acting according to your child’s actual needs or not. At that point, how you respond becomes the next hurdle to clear.

Every situation requires its own analysis and there is no way I can give you a one-size-fits-all solution, here. What I can tell you to do is pay attention, try to get a sense of the function of someone’s inappropriate behavior as best as possible, and offer reinforcers in order to achieve the behaviors you want to see.

For example, send a thank-you card to the school psychologist who actually threw down on an excellent report and you will positively reinforce legally compliant behavior. Or, withdraw a compliance complaint if the agency remedies the problem that compelled you to file it and you will negatively reinforce legally compliant behavior. They can earn a food pellet or stop their feet from getting zapped, metaphorically speaking, but, either way, they’re going to have to pull the lever. If you can keep these concepts straight, you will be in a much better position to effectively participate in the IEP process.

Posted on

Double Disability Whammy During Distance Learning

One of the issues that I haven’t seen discussed anywhere else, but am seeing first hand every day, is the impact that the shutdown has had on my students with disabilities whose parents also have disabilities. Given that so many learning disabilities, physical impairments, Autism spectrum disorders, and mental health conditions run in families, it’s not surprising to find children on IEPs whose parents also have disabilities. It would be shocking for a professional in this field to not see that phenomenon.

The shutdown negatively impacted students and their families from all walks of life. Students on IEPs were hit more hard only because they were already at a disadvantage and largely under-served before the pandemic hit. All shutdown did was magnify the pre-existing inequality.

To that end, parents with disabilities who were already getting jerked around by their local education agencies have been disadvantaged and exploited even further during school shutdowns. I’ve got two cases on my caseload, right now, that immediately come to mind. One is in California and the other is in Missouri, and in both cases I’ve had to serve as both a reasonable accommodation for the parent with disabilities as well as do my normal job of advocating for the student with disabilities.

In both cases, a bunch of goons from the respective school districts tried to railroad learning disabled parents who struggle to understand the relevant documents, saying one thing verbally, putting something else in writing, and hoping these learning disabled parents didn’t notice. The parents’ federally protected rights as per the Individuals with Disabilities Education Act (IDEA) to informed consent and meaningful parent participation in the IEP process are additionally compromised by violations of the parents’ rights under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA).

Here’s what I need everybody reading or listening to understand: The states involved here are Missouri, a red state practically overtaken by domestic terrorists bent on sedition, and California, a blue state with mostly progressive leadership. This is a non-partisan issue. There is no political party that seriously cares about people with disabilities, even though disability cuts across every swath of human existence that there is. It’s beyond dysfunctional, but that’s our profoundly sick society, for you.

So, what do we do about this? Well, on an individual basis, the steps of effective advocacy remain the same: get the truth on the record, request remedy, and file complaints if the local education agencies don’t abide. The number one protection parents with disabilities have under the ADA relevant to this issue is their right to communicate via their preferred form of communication. Reasonable accommodation isn’t limited to wheelchair ramps, and honoring a learning disabled person’s communication preferences is just as important as honoring the communication preferences of someone deaf or blind.

For parents with disabilities, it is important going in from the outset that you make clear in writing that you require reasonable accommodations from your local school district, including what your communication preferences are. It doesn’t hurt to add language like, “These accommodations under Section 504 and the ADA are necessary to insure my protected rights to informed consent and meaningful parent participation in the IEP process pursuant to the IDEA.”

If you have been keeping your need for accommodations to yourself for fear of being judged by the school district members of your child’s IEP team, something is seriously wrong. If you fear that people employed specifically to educate humans with disabilities are going to give you grief because you are a human with disabilities, either you’re insecure, working with a-holes, or both. You do yourself and your child no favors by not putting your local education agency on notice about your need for accommodations; if they treat you poorly, that’s on them for violating your rights as well as those of your child.

It’s stronger to go in asking for reasonable accommodations as your legal right given that you are there to protect your child’s right to reasonable accommodations. If you acquiesce on one, you’re acquiescing on the other. You have to believe that all people with disabilities are equal in power and voice to people without disabilities, including yourself. You are not setting a good example for your child to become a strong self-advocate in spite of disabilities when you fail to advocate for yourself.

Aside from what individual parents with disabilities do on a situation-by-situation basis on the ground, at this point, the only mechanisms available that have any chance of broadly changing anything are judicial and political. Parents need to sue over the civil rights violations that undermine their advocacy for their children so that public education agencies are held to account under every letter of the law that applies. All parents of children with disabilities need to unionize and collectively bargain for improved special education laws and access to special education resources.

In theory, parents with disabilities involved in the IEP process for their children may be able to concurrently file 504/ADA claims in federal court purely on the basis of the discrimination against themselves while filing for due process under the IDEA to assert their children’s claims. However, there’s a kicker that my colleagues who are licensed members of the bar should weigh in on, here.

With respect to informed parental consent and meaningful parent participation in the IEP process, the related civil rights claims may have to toll while due process is being pursued because a special education hearing officer has no jurisdiction with respect to 504/ADA but administrative remedies under the IDEA have to be first exhausted before related civil rights claims can be pursued. Basically, you have to do everything you can with due process before you can go on to federal court on related civil rights claims.

The reason civil rights claims often must toll pending due process is because the hearing officer in the due process case may order something to correct the special education violations that inadvertently cures the civil rights violations at the same time. This makes it unnecessary to get that same outcome from a federal court judge and, thus, a waste of judicial resources to try the same thing in two different venues. However, if the civil rights claims can stand alone on their own with no related due process claims associated with the same body of facts, it’s possible to go forward on civil rights claims while other claims are being adjudicated via due process.

Again, this is a tricky question of law and I defer to my colleagues who are licensed members of the bar to speak to the particulars of 504/ADA claims versus IDEA claims, as well as the order in which issues are tried and by whom. The point is that there is recourse, one way or another.

Parents with disabilities should not feel compromised in the IEP process. No parent should fear that a body of public servants educated, trained, and employed to support the needs of individuals with disabilities in the school setting will use that knowledge to exploit the parent’s disabilities to the detriment of the student. The very idea is reprehensible, but it happens every day.

Institutionalized biases have a lot to do with it. Even people employed to educate students with disabilities will regard a parent’s disabilities as character flaws, more often than not. It’s a learned, knee-jerk reaction that all of us have been raised with to one degree or another our entire lives. It’s why people with disabilities are often also plagued with self-loathing and related mental health disorders. Most people with disabilities aren’t born with self-loathing and mental health disorders; they are acquired from the experiences of being rejected by everyone else and seeing a world that is basically designed to exclude them from participation. Things that can be acquired can also be let go and replaced.

During distance learning, these issues became even more painfully apparent as schools shut down and children with special needs had to stay at home and participate in distance learning. Setting aside the degree of forgiveness due to actual teachers for not being given appropriate tools and support from their respective agencies to handle the situation, something cohesive should have been in place within the first few weeks, but I’ve still got school districts pulling ridiculous stunts and we’ve got partial campus re-openings going on around here, right now.

We’re now more than a year into this thing and, not only have they not gotten their acts together, they’re actively making excuses as to why the broke the law 40 million different ways before now. If they invested half the energy they’ve spent on making excuses and lying to the public into actually solving the problem, it would have been solved by now.

The politics of it all is at the heart of this issue, unfortunately. This is just as serious as domestic terrorism, because it’s actually one of many expressions of that terrorism. When parents with disabilities are terrified of the people to whom they send their children with disabilities every day, often with the threat of criminal prosecution for truancy if they don’t, they are being manipulated through fear to acquiesce on issues that, under the law, require their consent.

It is important for those of us who are working in the civil rights arena to recognize that we will find the students with disabilities we serve also among other marginalized populations that may have a stronger degree of activism already underway. For example, if a child with disabilities and African-American heritage is being jerked around, it may be more effective to bring a representative from the NAACP to an IEP meeting than a disability advocate. Likely, the best solution would to bring both.

This is an issue that child and family advocates need to address because it is vast, pervasive, and significant. When it comes to dumping the instructional responsibilities for a child with disabilities onto a parent with disabilities, the civil rights claims can easily multiply. I have had three cases this year involving parents with disabilities who were getting played by their local school districts until I said something. One case is resolved and the other two, which I mentioned at the beginning, remain active.

In every case, not only were the parents with disabilities being inappropriately burdened like all other parents during shutdown, they were not offered any reasonable accommodations to do so. In my mind, this is an enormous class-action issue that could result in entire state departments of education, which are ultimately responsible to the federal government for complying with the IDEA in exchange for federal special education dollars, getting nailed to the wall for failing to ensure local education agencies provided reasonable accommodations during shutdown to parents with disabilities who were attempting to instruct their children at home or who simply could not, resulting in a deprivation of educational benefits to their children.

I am very curious to get parent, advocate, and attorney input on this issue. If you have experienced anything like this, either as a parent or professional, and have ideas on how to lawfully resolve these issues with the least amount of trauma to the involved children and their families, we’d love to hear from you. For those employed within the system who want to do the right thing but are being prevented by others within the system, your feedback is appreciated as well.

The news is replete with evidence that far too many public servants can’t be trusted to uphold the rules of democracy. Because the IDEA is so dependent upon the application of science to the lawful implementation of special education, it tends to be those who disregard science and law who pose the biggest threat to our children with special needs.

Given how many Far Right conservatives there are employed within public education, the fact that the domestic Far Right is the greatest terrorism threat that our country faces, and that neither science nor the rule of law mean much to the Far Right, it’s not that hard to see why we need to get the Far Right out of our public school system. The Far Right is why civil rights laws are necessary in the first place. They’re not going to do the right thing because it’s the right thing to do. They don’t even understand what that means. They’re going to do whatever serves their selfish motivations.

People who follow the extremes at either end of any social spectrum, including politics, tend not to have fully functional prefrontal cortices, based on my observations. They lack the deductive reasoning skills to understand the big picture. They lack the perspective-taking skills to see things from anyone else’s point of view. They are egocentric in thought and grossly emotionally under-developed. They are prone to extreme actions and reactions based almost entirely on their own wants and needs.

In the special education setting, if you and your child’s needs don’t align with the agenda of people with this mindset, you don’t even exist to them. You’re like a person with a numbered ticket at the deli counter. They’re going to interact with you briefly and smile to your face, then forget you exist five minutes later. You’re a thing, not a person, to people like this. They don’t think of anybody as another “person.” Everybody else are just things to conveniently access when they serve a useful purpose to people who think this way. That is why holding them accountable after the fact is more effective than logical or emotional appeals made in an effort to prevent something bad from happening.

All of this is, of course, disordered thought. So, basically, what this comes down to is a bunch of mentally ill, self-serving individuals getting paid six-figure annual incomes at taxpayer expense to manifest their untreated and unaccommodated symptoms at the expense of their constituents. What we’re really looking at is the symptoms of untreated mental health disorders being manifested as public policy to the detriment of individuals who are not in denial about the fact that they have disabilities attempting to advocate for their children with disabilities.

The most apparent difference that I can see between the two sides of the issue is that the people within public education responsible for this situation don’t think there is anything wrong with themselves; they think they are the chosen ones and everyone else exists just to give them an excuse to collect a paycheck. When the special education community finally addresses the degree to which schizoaffective, personality-disordered administrators and the like are behind the egregious abuses of disability-related laws it experiences, and we use our science to heal ourselves, we’ll be able to actually use the science to heal our children and help them build productive futures for themselves.

Posted on

School Personnel, Conspiracy Theories, & Child Welfare

School Personnel, Conspiracy Theories, & Child Welfare
Christine Priola, OT, on the right in the Vice President’s Office of the Senate during the January 6, 2021 insurrection at the Capitol in Washington, DC

On January 6, 2021, a group of people, radicalized by false propaganda generated by the 45th President of the United States and his co-conspirators, attacked the United States Capitol with the intent to kidnap and/or murder members of Congress and the Vice President. This is an event that will live in infamy for so long as America remains a nation, and be blamed for it if it does not.

I’ve been working in special education advocacy, helping parents protect their children with disabilities from physical, emotional, and educational abuse/neglect by the public sector, primarily the public school system, since 1991. By now, you would think there’s nothing new for me to see when it comes to all the ways that adults can do wrong by those among us with disabilities. Clearly, I was wrong.

These recent events at the national level have left me with a whole new set of concerns that I believe are important to talk about, right now. Not the least of these concerns is the fact that a profoundly mentally ill president, along with his pathologically self-serving sycophants, exploited the suffering of some Americans with mental illness and the unfounded sense of entitlement experienced by other Americans with mental illness.

In the end, it’s a bunch of people with mental health issues frenzying like piranha at the smell of blood in the water and taking down the rest of us with them. The inmates are literally running the asylum, right now, and the survival of us all rests on the shoulders of those of us intact enough to realize what is happening, and equipped to deal with it.

For the last 30 years, it’s been my observation – and one I’ve repeatedly shared – that there are individuals employed within the public education system who believe children with disabilities are expendable and unimportant. In a sea of deprived students in general, special education students are uniquely further deprived because of their disabilities.

It’s been my observation that these individuals see their constituents – in this case, our children – as a means to their own personal financial ends, and nothing more. When the costs of educating these constituents increases due to disability, they become a hated burden to those looking to profit off them.

It’s not like the public education system is doing that great by any of our kids, right now. It’s just that problems that impact education in general tend to have a magnified effect on our kids with special needs. Public school officials will say things like, “My heart is bleeding for your child. I wish there was something I could do,” when there’s totally something they could do. They just don’t want to pay for it, which is unlawful.

Special education laws would have not become necessary back in the 1970s if it were not for the fact that people who do not believe in science or law were already employed in positions of authority within the public education system and engaging in unconstitutional conduct towards children with disabilities at that time. The public schools would refuse to enroll these students at all or, even if they did, let them languish in general education classes until they dropped out.

In spite of compulsory education laws, back in the day, it was totally okay to drop out of school if you couldn’t keep up with the instruction and nobody would come after you for truancy. This was what happened to a lot of people with relatively mild challenges, like learning disabilities, who ended up reaching adulthood functionally illiterate and unable to find gainful employment except as factory workers, coal miners, and all the other dangerous jobs that don’t require academic skills, in spite of their normal intelligence.

I provided adult literacy instruction to this population at a local vocational/technical college as a young adult in Arkansas. I’ve met these people. I’ve seen this play out, first hand.

This has led to a class of individuals who have increasingly lost the ability to support themselves, as robots take over dangerous jobs that don’t require real thinking. While the laws that passed in the 1970s were the right place to start, it’s foolish to think that enough has changed since then that the system isn’t still biased against kids with special needs. If things had changed, I’d have worked myself out of a job a long time ago.

The public education system is biased against any kid who isn’t white, male, and expected to inherit property upon reaching age of majority. It was created in its present form during the Industrial Revolution and hasn’t changed much since.

For the longest time, public education agency administration was male dominated while the teaching staffs were female dominated, putting men in authoritarian control over women employees. Teachers unions grew out of the very real discrimination and abuse of women in the public education workplace by their male “superiors” around the same time that unions gained popularity among the laborers working ot inher dangerous jobs in factories and mines.

Students, however, have no collective bargaining power. Even though they are the reason the system exists, they are the last individuals served by it. They get whatever leftovers are left after public agency administrators bleed their agencies dry with undeserved six-figure annual salaries while teachers are buying classroom supplies with their own money. Students are just an excuse for politicians to pay themselves.

So, the idea that discrimination and abuse do not manifest in the public education sector is plainly inaccurate. There are mountains of evidence to the contrary, my caseload being only one such mountain. The judicial and legislative history of special education law is not the total point, here, but it’s relevant in that it establishes that bad actors in public education have made it necessary to regulate public education to control for their inappropriate behaviors.

The evidence of bad faith in public education has been documented in the courts long enough that I don’t have argue it, here. That’s a done deal. So, when someone tells me they are worried about child welfare at the hands of government officials, I have to say, “Me too! That’s why I’m a child and family advocate.”

However, now when someone tells me they are worried about pedophiles in public education, I have to do a double-take and ask, “Why?” That’s only because of the whacky Q-Anon and similar conspiracy theories, now going around about Satanic cannibals molesting and trafficking children.

It’s not that human trafficking isn’t real or horrible. It’s that there is zero proof that it’s being perpetrated by the people these conspiracy theorists are targeting.

There is proof, however, that the 45th President was pals with a known, convicted pedophile and wished this pedophile’s co-conspirator well when she, too, got arrested. He’s also been accusing of raping a 13-year-old who was made available to him by this same duo of pedophiles, but these conspiracy theorists are not going after him. They think he is the champion of their cause, which defies logic in every possible way.

Even if the allegations of child rape cannot be sustained against #45, he’s sexually assaulted plenty of women and bragged about it on the record. How he’s become the champion of a human rights cause given his history of sexual assault and his policies regarding the children of lawful asylum-seekers at our borders is beyond me.

We have all seen news stories of the occasional teacher, aide, specialist, or administrator who gets busted for sexual relations with their students. It’s not that pedophiles are not employed within public education; we know some have slipped in and we do a poor job of screening them out, often only finding them after the harm has been done.

The more important point is that a ring of cannibalistic pedophiles do not run public education. The average school district administrator doesn’t come anywhere near actual children. They don’t appear to care for the company of children; they just want to exploit them for public dollars.

While I don’t doubt that there are people employed in public education administration who would gladly traffic in humans if they thought they could turn a profit and get away with it, that’s a whole lot of work to make happen within the public education system and not get exposed. It’s easier to milk the broken system as it is without taking on that risk. They can get rich by lazier means than selling their students into slavery.

As soon as someone gets caught engaging in pedaphilia with students in the public education setting, most school districts are the ones that call the cops. If school district administrators come to an accused educator’s defense, it’s either because the educator was wrongfully accused or because the administrators don’t want to be held accountable for the fact that they let a pedophile come work for their public education agency, so they’re trying to convince everyone that they didn’t.

It’s not that public education isn’t being run by a pack of corrupt jackals. By and large, like local police departments, local school districts get away with as much as they do because they only answer to their local constituents, most of whom don’t know how to monitor and audit a school district on an ongoing basis for compliance issues. Jackals are in gross abundance.

Even the most ethical educators can be corrupted once they are promoted into administration, and I suspect most of that is economics. Once they start getting that six-figure annual salary, they start buying nice houses and cars, putting their kids through college, and going on expensive vacations. That quickly creates debt.

If you have a six-figure income, you can pay that debt, but if you lose that income and can’t replace it fast enough, you’re quickly screwed. This is how good educators get pulled into the Dark Side of the Force when they accept promotions into administration. It’s the rare pure soul that sees what’s really going on and refuses to be manipulated that way before it’s too late.

The overarching problems I see in public school administration are about money, not pedophilia or cannibalism. I’ve yet to encounter cannibalism, actually, but it’s only January 2021, so let’s see if this year tops last year for the most disgusting conduct to be revealed among public servants for the whole world to see.

What prompts me to discuss this, now, is the recent resignation of Christine Priola, an Occupational Therapist (OT) from Cleveland Metropolitan School District, one day before she participated in the January 6, 2021 insurrection against the American government. Ms. Priola occupied the Capitol building with other insurrectionists and was photographed in the Vice President’s office as part of the occupation.

In her resignation letter, Ms. Priola, who is currently out on bail pending trial, stated she was leaving her job as an OT for the District’s special education department for three specific reasons:

  • She refused to take the Corona virus vaccine before returning to in-person learning;
  • She disagreed with paying union dues because she believes that money is funding abortions; and
  • She’s embarking upon a fight against child trafficking by government agencies.

So, I’m going to pick these apart one by one, first, and then get into the rest of it.

First, it’s unclear if Ms. Priola is an anti-vaxer opposed to vaccines in general, is against the current Corona virus vaccine because it was rushed to market so quickly and she questions its safety and efficacy, or just resents being told she has to take a shot before she can go back to work. Maybe it’s a combination of those things.

We don’t know why she was opposed to the vaccine, so I can’t automatically lump her onto the science-denying anti-vaxer wagon with this limited amount of information, though her overall behaviors incline me to suspect that she could be an anti-vaxer. Because she’s an OT, which is a scientific discipline that functions within the medical and educational realms, I don’t want to assume too much, here. However, science is a fact-based discipline and Ms. Priola has not be operating according to facts.

When we look at her second objection, the total absence of logic casts an unfavorable light on the first objection, even further. How union dues, which pay for the administrative overhead of each union’s operations, somehow funds abortions makes no sense.

The district may withhold those dues from educators’ paychecks, but there is an audit trail that shows where that money goes. If you’re worried about where the money is going, you do a request for public records asking for the accounting details and turn them over to a grand jury if you find that the money is being misappropriated.

The rule of law already provides a remedy for the misuse of public funds. You don’t raid the Capitol with the intent of hanging the Vice President to death to resolve issues such as these.

The idea that the rule of law had collapsed to the point that it was ineffective cannot be argued, here. Ms. Priola did nothing on record to resolve the issue with where her union dues were going before resorting to the violent overthrow of the government and an effort to assassinate the Vice President.

The government already had a legal remedy that she chose not to access and the “remedy” she opted for instead did not fit the situation. This strongly suggests disordered thought. It also, however, goes to the degree to which legitimate remedies to harm done are often inaccessible to everyday Americans because they can’t afford to lawyer up every time the government shirks its responsibilities and hurts people. When the appropriate options are closed off to people, they are only left with the inappropriate ones.

This is where peaceful protests for changes to the rules become such an important part of democracy, none of which involves insurrection or execution. Insurrection as a more expedient option to litigation speaks to the degree to which the legal system is often unavailable to most people because of the associated costs, but it’s not a valid excuse for what Ms. Priola has done. Ease of access to remedy may have made it less likely that she wouldn’t have done something literally insane, but that’s speculative at this point.

The third justification for resigning given by Ms. Priola was that she’s embarking upon a fight to protect children from abuses by government employees. On it’s face, I can’t take issue with that because I’ve been fighting to protect children with disabilities – the same students Ms. Priola served as an OT – from abuses within the public education system for the last 30 years.

Very often, though, I’m protecting them against people like Ms. Priola who are so divorced from science and, therefore, reality that they engage in violations that require me to file complaints with regulators. Again, the rule of law provides a remedy. The difference between Ms. Priola’s efforts to protect children and mine is that I use science and law to protect my babies. She’s trying to kill the members of Congress most likely to help her protect children from the real predators.

I’ve never had to violently overthrow a government agency or hang anybody to protect a child from government employees. Has the rule of law let my babies down, before? Yes, in hugely significant ways. Has the rule of law protected my babies when I’ve pursued enforcement of it? Yes, more often than it has not. It’s not a perfect system, but insurrection on behalf of the people responsible for undermining it is not going to fix anything.

And, it’s not like I haven’t seen evidence of child trafficking in government agencies. I have, just not in public education. Specifically, I’ve been working on a separate justice project with our organization’s founder, Nyanza, to address the egregious over-incarceration of African-Americans in Oklahoma that dovetails with what may be State-sponsored child trafficking.

Based on the publicly available research data we’ve gathered to date, it appears there may be an orchestrated mechanism in place in which officials in the State of Oklahoma incarcerates people of color and remove their children from their homes through the Child Protective Services (CPS) system, only to place these children in privately owned foster care facilities and/or adoption agencies that operate for profit.

It appears that at least some of the foster care and adoption agencies in Oklahoma that participate in this dynamic are owned, at least in part, by State officials responsible for passing and enforcing the laws of Oklahoma, from which they profit. It should be noted that Oklahoma’s CPS system was found to have been responsible for the death, rape, and maiming of many children processed through this system via a federal class action lawsuit that resulted in a consent decree that is not being properly enforced.

CPS employees have come out as whistleblowers to advise that the “proof” of compliance with the consent decree is falsified information and Oklahoma isn’t taking this federal court consent decree as anything other than one more thing to lie about. It should also be noted that all of the individuals involved in these behaviors appear to be Republicans, or they were at the time the data we collected were gathered.

From what we’ve seen so far in our data, it appears that Oklahoma lawmakers and judges are incarcerating people so they can steal their children and sell them for profit. If true, that’s a legitimate State-sponsored human trafficking ring that needs to be shut down immediately. But, it isn’t a Satanic group of Hollywood actors and Democrats eating and raping children.

While this possible human trafficking ring has not been investigated as such to my knowledge, thus far, it’s one of those things that can’t last forever without someone getting caught. Nyanza and I are working to get enough evidence together to get the situation investigated, and she’s been filing documents this whole time, but that’s how you address these things. We are availing ourselves of the mechanisms of our imperfect, but better than anarchy, democracy to fix this heinous problem. Whatever is responsible for Oklahoma’s ridiculous incarceration and CPS numbers is a problem that needs to be fixed, regardless of what it is.

This is painful because we know of families suffering horribly because of what is currently happening until this gets resolved, but justice can take time. I’ve learned that lesson from 30 years of working cases from IEP meetings all the way up to the 9th Circuit Court of Appeals, and you don’t always win. But, you always make a difference, even when you lose on some technicality. I’ve had cases where we lost on an issue, but just barely. The involved districts knew the next time they pulled the same stunt, they wouldn’t necessarily get lucky again, and have changed their practices as a result.

What I’ve learned from relying on the rule of law to address failures of the system is that you have to look at things in the aggregate. It becomes a measure of how many things I’ve prevailed on versus how many things I have not, and I’ve prevailed on more things than I haven’t. Overall, my work is highly effective. On a day-by-day basis, it’s a mixture of resolution and being obstructed by law-breaking public servants.

You have to get to the point where you can identify when it’s time to negotiate and when it’s time to collect evidence and file a complaint of some kind. We have processes and procedures already to address all of the concerns raised by Ms. Priola’s resignation letter, none of which involve insurrection and execution of elected officials.

So, having said all that, now I have to turn to the issue of people who think like Ms. Priola who are still employed in public education. I first have to say that she may be in the minority, but we don’t know how large or small that minority is because they have not been outspoken within the public education context, thus far.

Further, because I have been dealing with disordered thought on the part of school district personnel that results in harm to children for the last 30 years, I’m willing to believe that people whose thinking is as impaired as Ms. Priola’s appears to be are still deeply rooted in special education, right now. Whether their disordered thought makes them vulnerable to Q-Anon and similar propaganda or not isn’t anything I can answer. But, Ms. Priola’s departure from science in spite of her scientific training is consistent with much of what I see in special education when things go wrong.

What this really comes down to is a concern that I’ve had for years and have spoken about with colleagues, but we haven’t really figured out the most appropriate way to address it. What is happening now and the national dialogue around it may have finally opened a door to deal with this issue, and that issue is the societal impact of having so many members of our population who are apparently incapable of logical thought when it comes to abstract concepts like justice, democracy, and fascism. And, it circles back around to the quality, or lack thereof, of our public education system.

One of the tools I regularly use, or request that it be used, in special education is a standardized assessment called the Southern California Ordinal Scales of Development (SCOSD). The history of what led to the SCOSD’s creation is a story unto itself, but suffice it to say that it is a scientific way of measuring all the different domains of development according to Piaget’s stages of development.

The SCOSD breaks development down by subtest into cognition, communication, adaptive abilities, social-affective functioning, and motor skills. It is possible for an individual to function at a higher developmental level in one area than other areas. Each person’s outcome on the measure paints a picture of their relative strengths and weaknesses across the developmental domains. When working with children and young adults with developmental disabilities, this becomes important to designing effective programs for each of them.

What I’ve come to realize from the data I’ve seen produced by the SCOSD over the years is that it is possible for someone to have age-typical cognitive and communication skills, but then have below age-typical social/emotional functioning. What this means is that their emotional development is delayed while their abilities to acquire academic and job skills are intact. They can emulate adult behavior, but their motivations are child-like because of their delayed social/emotional functioning.

When otherwise intelligent people get whipped up into an emotional frenzy over things not supported by any credible evidence, this disconnect between intelligence and social/emotional functioning is apparent. When otherwise intelligent people argue against evidence that they did something incorrectly, this same disconnect is again apparent.

This disconnect is what I’ve been fighting over the years more than anything else. Any reasonably intelligent and socially/emotionally intact person would not engage in the kinds of crap I encounter in the public education system. Most of what I encounter in the public education system is the consequence of ineptitude, not a cabal of cannibals.

If any kind of cabal exists in public education, it’s the same one currently running the American Presidency into the ground. All of this makes me think of the right-wing folks in Orange County, California, who started a non-profit membership organization, self-described as a “brotherhood,” of school district officials who would all pay membership dues and then use that money to finance legal battles against parents of children with disabilities.

It also makes me think of Lozano Smith, a law firm that infamously (within special education circles) got eviscerated by a federal court judge after trying to lie, cheat, and steal in a special education due process appeal. The firm, the responsible attorneys, and the district it was representing all got sanctioned for jerking everybody, especially the court, around with their lies.

All of the firm’s attorneys were ordered to participate in additional ethics training, in addition to the reprimand and sanctions meted out by the court. At the time, Lozano Smith had over 200 attorneys on staff statewide throughout California. Shortly thereafter, most of them jumped ship and went to different firms or started their own firms. It’s quite reminiscent of what we are seeing in Washington, DC, right now, as cabinet members and other high-ranking personnel turn their backs on the outgoing President in the wake of all the destruction and death he has caused.

Lozano Smith is still around, but I haven’t encountered them in the field in several years. The last big thing I saw from them was in 2013 when my colleague, David Grey, prevailed on a case at the 9th Circuit against two school districts engaging in the same violation of the Americans with Disabilities Act (ADA). At least one of the involved districts filed an appeal to the U.S. Supreme Court, but it was shot down; the Supreme Court declined to try the case.

When the Supreme Court appeal was first filed, Lozano Smith, which had been uninvolved at that point, wrote an amicus brief that looked like something that could have been produced by Sidney Powell and Rudy Giuliani. It made nearly hysterical arguments about how the 9th Circuit’s interpretation of the ADA would undo decades of precedent within the public education system, as though decades of an established practice of discrimination should be maintained.

The point is that the conservative “fringe” has never been the “fringe.” To quote Stephen Colbert, “Lunatic fringe? There were tens of thousands of people in that murderous mob. The day after the riot, a poll found that 45% of Republican voters backed the attack on the capitol building. That’s not a fringe! That’s almost half the outfit! If you wore a suit that was 45% fringe, you’d be arrested for public indecency! But at least we’d be able to see through your pants to know you don’t have any balls!“

Based on how scholars look at the political spectrum, conservatives have gone further and further to the right towards radicalization as the left has remained predominantly centrist. The far right looks at centrist politics and mischaracterizes them as the “radical left.” Democracy is not the radical left.

Conservatism is no longer part of democracy in this country; it’s become a movement towards dictatorship in which 45% of the population believes it needs to be led by the nose by a demagogue. When left to think for themselves, these individuals run towards authoritarianism, thinking these leaders understand their needs and will fight for them, rather than exploit them to help take over and then kick them to the curb when they no longer serve a useful purpose.

It’s my suspicion that, once the people who participated in the insurrection realize that the 45th President will let them rot in jail for taking up his cause while he claims to have nothing to do with any of them, his base will finally get the backstabbing that has been coming their way this entire time and will realize he’s not in their corner like they thought. We can at least hope getting stabbed in the back will have this effect.

We’re going to have to watch the prosecuted go through this epiphany over time as we try each of their cases one by one. The stories we’re going to hear from these people are going to reveal legitimate unmet needs, impaired problem-solving skills, and exploitation of those factors by Republican terrorists looking to radicalize them.

Those of these defendants with the mental wherewithal to realize they’ve been played and the emotional stability to own it will turn on those who exploited them, as have many former allies of #45, such as Michael Cohen. Those who don’t have the emotional stability to own the fact that they made a mistake in judgment will continue to assert they’ve done nothing wrong and describe themselves as political prisoners rather than criminal insurrectionists and traitors.

In the minds of the insurrectionists, as they’ve reported themselves, they were responding to the call of their President to defend democracy. If that’s what you’re really doing, defending democracy isn’t bad. But democracy relies on the rule of law. You defend democracy by participating in it and putting its mechanisms into constructive use, not trying to overthrow it.

If our democracy is not working for all of the people – and people of color, indigenous people, LGBTQ+ people, women of all stripes, and people challenged by disability can attest that it has not for a very long time – we need to fix it. What boggles the mind is that now that groups made up mostly of white males in this country are finally beginning to experience the lack of undemocratic entitlement and advantage they’ve historically known, their response to advocate for themselves is to engage in insurrection. This means that what they want is nothing a true democracy would ever give them, and that tells you all you really need to know about them.

There is absolutely a silver lining in all of this, and I rely on Applied Behavioral Analysis (ABA) to inform that determination. In ABA, there is a term that I’ve discussed in previous posts called “Extinction Burst,” and that’s part of what we are looking at with the current state of things. In an Extinction Burst, a behavior that had previously been reinforced is no longer being reinforced, and the organism tries to force reinforcement to come by escalating its behavior.

Think of it this way: If, every day, you put money in a vending machine and a candy bar comes out, the candy bar reinforces the behavior of putting money into the machine. But if, one day, the candy bar gets stuck and won’t come out of the machine, what do we do? Walk away sad? No! We beat on the machine in an effort to make the candy bar dislodge and come out.

That’s an Extinction Burst. If the candy bar dislodges and comes out, it reinforces the behavior of beating up the machine. If beating the machine doesn’t work, then you walk away sad. After than, you’re less likely to use the machine again. If you stop using the machine altogether, the behavior of putting money into it becomes extinct.

What is happening in this country with the radicalized right is an Extinction Burst. Behaviors engaged in by the right wing that were previously reinforced are no longer being reinforced. The behaviors of the 45th President, his co-conspirators, and his followers over the last five years, leading up to January 6, 2021, and what may still yet happen as the 46th elected President takes office, have been an extended Extinction Burst.

The most important thing about an Extinction Burst when you’re trying to extinguish an inappropriate behavior is that you cannot allow it to produce the reinforcement being sought. If you want someone to give up on the candy machine, there can be no way to beat the machine until candy comes out.

We want the radical right to give up on trying to destroy democracy, so we cannot allow their behaviors to result in the reinforcement they are seeking, which, here, is to remain in power regardless of the will of the people. This includes holding them accountable according to the letter of the law. That’s what I’ve been doing in my niche of governmental accountability for the last 30 years and it’s the only way to preserve democracy going forward.

The other silver lining, here, is that in spite of all their efforts to overthrow democracy, it’s our democracy that will ultimately prevail. When we apply the rule of law to what they have done, democracy will have the opportunity to defend itself.

What saddens and scares me the most is the number of people whose developmental weaknesses and mental health conditions are being exploited by the right wing to radicalize them into becoming domestic terrorists while convincing them they are upholding American principles through their terrorism. When we talk about the mental health problems in this country, we tend to point to homelessness and addiction issues, like this is the only way they can hurt us.

As an advocate for people with disabilities, I am torn between being sad for and fearful of these individuals. On the one hand, we absolutely need to hold them accountable under the law. But, we prove the point that the system is skewed towards specific demographics when mentally ill right wing radicals suddenly get criminal consequences and nothing to address the real-world problems that they couldn’t solve that propelled them into radicalism.

In the end, once again, it’s people with disabilities being used as political pawns by self-serving, undeserving, overpaid public officials looking to line their own pockets with taxpayer dollars as part of a grift. This is something I know all too well in special education.

I’m willing to believe, in light of the evidence thus far, that decades of special education failures have produced an entire class of emotionally disturbed adults who are still vulnerable to the manipulations of public officials and that Ms. Priola and many of her compatriots are among them. I’m also willing to believe, in light of the evidence thus far, that the people manipulating them are just as mentally ill; they just have money and power.

I will never pretend to have all the answers, here, but I do know a thing or two that can help. All of us do. We need to weave our efforts together to repair the fabric of our country and make it stronger than it was in the first place. It’s not impossible. This country’s founding was far more difficult than its current preservation and we can do this.